An evaluation of the impact of narrative arts interventions on care practice in residential care...

An evaluation of the impact of narrative arts

interventions on care practice in residential

care homes for people living with dementia

Vivien Young

Student number: 08006132

Supervisor: Dr. Jacqueline Reynolds

Head of department: Dr. Barbara Emadi-Coffin

Dissertation submitted in partial fulfilment of the requirements for

the award of Masters Degree in Community and Participatory Arts

Faculty of Arts, Media and Design, Staffordshire University

May 2013

08006132 -‐ Community and Participatory Arts - 2013

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ABSTRACT

An increasing elderly population in the UK has resulted in more people now

living with dementia in residential care homes. Evidence of poor practice in

some homes led to the first National Dementia Strategy (Great Britain.

Department of Health, 2009) being introduced by the Department of Health in

2009 to improve quality of care. Life story work and participation in the arts

are seen as beneficial for people with dementia and participatory narrative

arts interventions combine both approaches. However, little is known about

the impact of these activities on dementia care practice. Using a qualitative

research approach, different perspectives on dementia care are examined

and discussed. The significance of communication, relationships and sensory

stimulation to person-centred care is explored in depth. The study evaluates

the contribution participatory arts can make to quality of life by considering

how narrative arts interventions influence dementia care practice.


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ACKNOWLEDGEMENTS

I wish to thank my supervisor Jackie and the Creative Communities team for their continuous guidance and support, my fellow students on the MA course for their encouragement, all the people who willingly agreed to be interviewed during my research and a big thank you to my partner Nick for his patience, support and constant kindness. The study is dedicated to my parents who inspired my interest in the subject of dementia care.


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CONTENTS

PAGE

Chapter 1 Introduction 4

Chapter 2 Literature Review 9

Chapter 3 Methodology 25

Chapter 4 Findings 44

Chapter 5 Discussion 63

Chapter 6 Conclusion 77

BIBLIOGRAPHY 82

APPENDICES 109

1. ACRONYMS

2. ETHICAL APPROVAL

3. SECONDARY RESEARCH

4. SEMI-STRUCTURED INTERVIEWS

5. ANALYSIS OF FIELDWORK

6. KITWOOD’S CARE INTERACTIONS

7. LIFE STORY MAP AND NARRATIVE ARTS IMAGES

Total word count: 17,577


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CHAPTER 1 - INTRODUCTION

This dissertation is submitted in partial fulfilment of the requirements for the

award of Masters Degree in Community and Participatory Arts. The study

was developed to explore how community artists and participatory arts can

contribute to improving quality of life (QoL) for people living with dementia in

residential care homes.

Over the past two decades there have been increasing concerns about the

quality of residential care for people living with dementia in the UK. The

percentage of people with dementia is projected to increase annually (ONS,

2011), as more people now live on into their 80s and 90s. There are already

indications that care homes for people who are elderly and mentally infirm

(EMI) struggle to cope with the complex needs of residents with dementia.

Since the introduction of the National Dementia Strategy (Great Britain.

Department of Health, 2009), there has been a profusion of guidelines

outlining principles of good practice in dementia care (Metcalfe, 2009). The

Care Quality Commission (2013), responsible for regulating and monitoring

health and social care, has made changes in how they inspect care homes

and now seek evidence that life story information (Appendix 7) is collected on

residents and meaningful activities are provided for their social care.


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It can be difficult for care staff in residential homes to get to know people with

dementia and care duties limit the time available to build good relationships

with residents. Communication problems such as aphasia, when people

struggle to understand or find the right words for what they want to say, and

behavioural issues including anxiety and confusion are all aspects of

dementia that can inhibit social interaction (Alzheimer’s Society, 2011b).

Care home managers are now expected to obtain detailed profiles of

residents’ lives and interests on admission in order to develop appropriate

social needs’ care plans. However, too often, this biographical information is

not accessible to care staff and is overlooked when planning social and

recreational activities. The opportunity to use this information to make care

practice more person-centred, and so increase QoL for residents, is also

often missed (McKeown, Clarke & Repper, 2006).

Narrative arts interventions may help to address this problem by making

some of the key aspects of people’s lives and interests accessible to share

with care staff to promote meaningful social interactions. For the purpose of

this study the term ‘narrative arts interventions’ refers to any creative activity

with a biographical element that promotes personal recognition, storytelling or

reminiscence.

The overall aim of this study is to evaluate the extent to which participation in

creative activities, with a personal biographical significance to the participant,


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can impact on care practice and contribute to improving QoL for care home

residents living with dementia. Following my literature review, I developed

two research questions to explore: Firstly, to find out how participatory

narrative arts interventions contribute to a greater recognition of the

individuality of people with dementia and secondly, to see how this approach

impacts on care practice and contributes to improving QoL.

My hypothesis is that healthcare staff are better equipped to communicate in

a meaningful way and meet both health and social care needs of residents if

they know more about each individual person’s life, interests and preferences.

Incorporating this knowledge into creative activities that stimulate storytelling

not only supports the wellbeing of residents but also can have a positive

impact on daily care practice and the QoL for people living in residential care

homes.

The underlying issue of this research is to explore the disconnect between a

care-giver’s role in keeping a person with dementia safe, comfortable and in

good physical health and the usual social interaction when both parties in a

relationship have equal competence: that is, when both people are able to

communicate and relate to one another with ease, acknowledging their

separate interests and identities with equal ability.

The study evaluates whether a particular creative intervention, that of

narrative arts, can bridge this disconnect and serve to inform and enlighten


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caregivers so that they can more easily recognise the individuality of the

person they are caring for. Additionally whether this might result in a change

in approach to care that makes the person with dementia feel that they are

recognised, validated and respected within the care home community in

which they are living. Without the recognition and reminder of the individual

person, beyond the diagnosis of dementia, there is a risk that sometimes

people can just be seen as objects needing to be serviced (Kitwood, 1997a).

There is evidence in the literature relating to the poor QoL for some people

living with dementia in residential care homes (Alzheimer’s Society, 2007b).

One contributing factor appears to be that it is sometimes difficult for care

staff to engage with people with dementia in a meaningful way, when

language and behaviour issues create barriers to the usual avenues for

communication (Leahy, 1995). These problems have an impact on people’s

sense of identity and wellbeing (Cohen-Mansfield, Golander & Arnheim,

2000).

As an arts and health practitioner, with some experience of dementia care

from my family and my community arts work, I have seen some of the

challenges that healthcare providers face when attempting to deliver good

care practice. I am also aware of the many creative interventions that can

enhance QoL and increase wellbeing for people living with dementia (eds.

Kaye & Blee, 1997).


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The issues and insights explored in this study are examined in the following

chapters: In Chapter 2 the literature review outlines developments in

dementia care over the past two decades and the shift towards a more

person-centred approach. The literature includes references to many

participatory arts interventions, such as creative life story work, reminiscence,

storytelling and visual arts. The methodology for this study is explained in

Chapter 3. Here I describe the rationale behind the qualitative research

approach chosen, developed in response to some of the ethical issues seen

in dementia care. In Chapter 4 the research findings are presented. There

were many challenges and issues seen in the data that contribute to making

person-centred care practice sometimes difficult to achieve in dementia care.

I discuss the research findings in Chapter 5. Here I address three key topics

found in the literature review, which also relate to the secondary research

data and fieldwork. These represent areas where narrative arts interventions

can most effectively offer a useful contribution to dementia care practice. The

conclusion is in Chapter 6, here I present a short summary of the research

undertaken with an overview of the integrated findings and recommendations

for further research. In the next chapter I outline the background to current

dementia care practice with reference to changes in policy and approach

relating to key aspects of dementia care research found in the literature.


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CHAPTER 2 - LITERATURE REVIEW

This chapter provides a broad review of the literature associated with

participatory arts work involving people with dementia. It encompasses

viewpoints primarily from the fields of community and participatory arts, health

and social care. The review focuses on narrative arts interventions, which

may be linked to life story work and the impact of these activities on the lives

of residents with dementia living in care homes.

The current literature is viewed within the context of recent policy measures

put in place to address concerns about the QoL for people living with

dementia in residential care (Great Britain. Department of Health, 2009;

2010). The Care Quality Commission (2010a) regulates the essential

standards for residential and nursing homes following principles outlined in

the Health and Social Care Act 2008 (Appendix 3).

The review begins with an outline of some of the reported problems with

dementia care and the various methods that have been used to address

failings in residential settings. The subject of narrative arts interventions is

explored alongside new insights regarding dementia care over the past two

decades, which have led to visions of a more person-centred approach

(Barnett, 2000; Brooker, 2007). Key issues generating major changes in the

culture of dementia care are discussed in the context of a greater acceptance

of participatory arts interventions in healthcare settings since the 1980s (Arts


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Council England, 2007; Clift, et al., 2009; Mental Health Foundation, 2011).

An evaluation of creative interventions in dementia care is a particularly

significant area of research at present as dementia is reported to be “…one of

the biggest health and social care challenges of our time…” (Health & Social

Care Bill 2010-11). Statistics reveal that over 820,000 people are currently

living with dementia in the UK (Alzheimer’s Research UK, 2012) and this

figure is expected to increase to a million by the year 2021 (Alzheimer’s

Society, 2012). The challenge of dementia care is not going away, records

show that the number of people aged 85 and over is now the fastest growing

sector of the UK population (ONS, 2011). Although many people with

dementia are cared for in the community more than a third eventually move

into residential care (Alzheimer’s Society, 2007a).

Reports about poor care practice in residential homes for people with

dementia are now becoming more frequent (Panorama Undercover: Elderly

Care, 2012; Lord, 2009) and there is evidence that QoL can be seriously

compromised as care homes struggle to survive in a highly competitive

market place (Can Gerry Robinson Fix Dementia Care Homes?, 2009).

Poor QoL predictably correlates with a higher incidence of depression in care

homes, reported to affect around 40% of residents (Denning & Milne, 2009;

Godfrey & Denby, 2004; Lyne, 2006). There are further concerns that

depression in older people is often overlooked, “Depression in people aged


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65 and over is especially under-diagnosed and this is particularly true of

residents in care homes” (Great Britain. Department of Health, 2001, p19).

To understand how narrative arts interventions could contribute to improving

this situation it is essential to learn more about what constitutes a good QoL.

Since the 1990s the QoL for care home residents has become a particular

focus of dementia care research with many different approaches to how it is

assessed, depending on which perspective it is viewed from (Alzheimer’s

Society, 2010; Help the Aged, 2007; University of Bradford, 2011). Overall, a

common grievance is that the viewpoint of the person with dementia is not

considered as relevant (Barnett, 2000; Bond, 1999; Goldsmith, 1996;

Kitwood, 1997a; Menne, Judge & Whitlatch, 2009; ed. Wilkinson, 2002).

Community and participatory artists, such as dancer Jill Hayes (Hayes, 2011)

and poet John Killick (You and Yours, 2009), believe that the arts provide a

medium through which the individual views of people living with dementia can

be revealed. Abraham (2005) acknowledges that the interpretation of such

material is critical but can be difficult. Zeisel (2010) agrees, stressing the

importance of finding ways to consult with people with dementia. A Canadian

study with a nursing perspective (Jonas-Simpson & Mitchell, 2005) revealed

how care home residents, when they were asked directly about QoL, chose to

focus on issues such as:

…feeling content…relationships…feeling worthy, wishes for freedom amid restrictions, living with loss, struggles with thinking and communicating and persisting with life patterns… (Jonas-Simpson &


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Mitchell, 2005, p.52-53).

Other studies also cite the importance of relationships to wellbeing (Hoe, et

al., 2009; Kolanowski, 2011) as well as participating in meaningful activity and

maintaining a sense of autonomy (Menne, Judge & Whitlatch, 2009). There

is ample evidence that participation in arts activities can increase QoL

(Burton, 2009; Courtney, et al., 2003; Gibson, 2011; Saul, 1993; Zeisel,

2010), yet little of this knowledge is transferred into dementia care homes.

The Alzheimer’s Society (2007b; 2010) reports that the challenge of meeting

the medical needs of dementia is often cited as a barrier to addressing such

QoL issues.

The medical model of disability (Shakespeare & Watson, 2002), where people

are defined by their dementia diagnosis, has influenced the way care services

have evolved prioritising safety and medical needs over QoL. However, the

social model of care (Carson, 2009; Robertson, 2010) is now gaining more

recognition in residential care homes with a balance of approach that also

meets the social and psychological needs of the person (BMA, 2011; Epp,

2003), providing more humanistic care (Bush, 2003). Referring to a report on

raising care practice standards the Alzheimer’s Society asserts that

“…availability of activities and opportunities for occupation is a major

determinant of quality of life and affects mortality rates, depression, physical

function and behavioural symptoms” (Alzheimer’s Society, 2007b, p.v).

It can be argued that the range of therapeutic approaches that arose in the


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1980s and 90s (Barnett, 2000; ed. Marshall, 1997) naturally led to a shift in

focus towards the perspective of the person with dementia. Reality

Orientation, an approach aimed to reduce confusion (Holden & Woods,

1988), and Validation Therapy (Feil, 1982) both acknowledge the emotional

impact of living with a diagnosis of dementia. These innovative care

approaches now chime well with current thinking.

Marshall (ed.,1997) maps out the change in dementia care practice towards a

more person-centred approach, citing in particular the work of Tom Kitwood

(1997a) who founded the Bradford Dementia Group in 1992 at the University

of Bradford. Research from the Universities of Stirling, Bristol, Newcastle,

Belfast and the Republic of Ireland also contributed to changing attitudes to

dementia care (eds. Innes & Hatfield, 2004; Marshall, 1997) stimulating the

acceptance of new kinds of care practice, (Alzheimer’s Society, 2010;

Szczepura, et al., 2008).

Most of the new approaches to dementia care practice are now based on a

model of person-centred care, developed from the concept of personhood as

pioneered by Kitwood, (1997a; 1997b). This new approach was at the time

seen as a completely new philosophy of care embracing dignity and a

recognition of the uniqueness of the person with dementia (Cohen-Mansfield,

Golander & Arnheim, 2000). It was Kitwood who demonstrated how

personhood could be incorporated into everyday routine dementia care,

beginning with “…12 different types of positive interaction…” (Kitwood, 1997a,


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p.89) (Appendix 6). This concept, developed from an observational study

using Dementia Care Mapping (Clarke & Bowling, 1990; University of

Bradford, 2011), is particularly relevant for staff working in residential care

homes. Personhood was defined by Kitwood as “…a standing or status that

is bestowed upon one human being, by others, in the context of relationship

and social being. It implies recognition, respect and trust…” (Kitwood, 1997a,

p.8).

Kitwood (1997a, p.45) referred to poor care practice as “…malignant social

psychology…processes that work towards the undermining of people with

dementia” and was particularly concerned to find a way to enable care staff to

better understand the patient’s perspective. Although there is now specialist

dementia care training available this clearly does not reach all care staff

(Crandall, 2007). Savundranayagam, et al. (2007) believe that there is a

need for further research into new interventions that improve:

…staff perceptions of residents [to] yield positive consequence in terms of increased resident cooperation and reductions in problem behaviors, and the impact of such consequences on workforce satisfaction and residents’ quality of life (Savundranayagam, et al., 2007, p.59).

More recent social and psychological interventions, such as resolution

therapy (Bush, 2003) and reminiscence work (Schweitzer & Bruce, 2008),

focus on finding avenues whereby people with dementia can be supported to

express themselves. Both approaches endorse the benefits of connecting

and communicating with others through conversation and personal


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storytelling (Gibson, 2011; Jonas-Simpson & Mitchell, 2005).

Ryan et al., (2005, p.25) contend that conversation is a care strategy in itself

as it “…promotes personhood when the conversational partner shows

continuing interest in the person and his/her life story, preferences, emotions

and needs”. This study considers what influences care practice, showing the

impact of a greater recognition of the person, and supports the provision of

person-centred care initiatives now incorporated into Government policy.

The first UK National Dementia Strategy (Great Britain. Department of Health,

2009), has attempted to address some of the issues of poor QoL in dementia

care with recommendations to actively acknowledge individual people and

embrace the benefits of both life story work and creative activities:

There is a growing interest in Life Story work, which provides an effective vehicle for care home staff to communicate and develop relationships with residents, based on their unique life experiences. Equally the provision of therapeutic activities within care homes, such as art therapy, music therapy or dramatherapy, may have a useful role in enabling a good-quality social environment and the possibility for self-expression where the individuality of the residents is respected (Great Britain. Department of Health, 2009, p.58).

The Dementia Strategy in this way effectively supports the concept of a

narrative arts approach. Narrative arts interventions incorporate numerous

art forms but all contain an element of personal storytelling associated with

the participants’ personal biographies. The literature includes many narrative

arts interventions in the context of arts and health activities for people with

dementia (Arts Council England, 2007), while others are reported from a


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social science perspective (Ryan & Martin, 2011). Some of these involve

working in small groups, which can help stimulate “…memories and [provide]

the extra impetus to communicate” (Abraham, 2005, p.46), with most

participants still requiring one-to-one support to engage in the intervention

(Beard, 2012).

Art therapist Abraham (2005) and Mandala artist Gilchrist (2007) believe that

people who are non-verbal can be encouraged to reveal some of their

interests and life experience through painting and drawing, which provide

opportunities not only to express their identity (Kolanowski & Buettner, 2008)

but also to connect with others. Hayes (2011, p.33) also argues that creative

expression is an important “…relational bridge…” believing that stories can be

conveyed to others through dance and song as well as in visual arts and

poetry. Age Exchange (2010) has for almost thirty years been creating

reminiscence and performance activities together with training for healthcare

staff showing the significance of memory, communication and relationships

via the arts:

When a person is unable to communicate adequately and effectively, the capacity for relationship is reduced, the achievement of potential inhibited and the impact on quality of life may be enormous (Leahy, 1995).

The value of memories was made particularly significant in one project when

older people were paired with artists to create diorama memory boxes using

collage, photography and crafts (Age Exchange, 2004-5) (Appendix 7). In

this way the participants were able to find new ways to share and validate


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their stories. The Library Theatre in Manchester use costumes, props,

sensory items, music and action to engage people in their participatory arts

‘Storybox project’ (Harries, 2013). The artists believe that it is critical to share

their ideas with carers so that the person-centred approach can be sustained

after they have left “…creativity can be incorporated into the day-to-day care

of older people…everyone should have the opportunity to try new things and

be culturally active...” (Evans, 2012, p.5).

Community artists Arthur+Martha (2010) (Figure 1) and others use narrative

visual arts, storytelling and collaborative poetry writing to stimulate memories,

each involving adaptable activities designed to trigger meaningful

conversations (Killick & Allan, 2001; Ryan & Martin, 2011; TimeSlipsTM, 2005).

While another structured reminiscence approach SonusTMapc (Hamill &

Connors, 2004) is multi-sensory, encompassing artefacts to handle and

explore. In dementia care touch is seen as significant in numerous ways, for:

memory (ed. Chatterjee, 2008); storytelling (UCL, 2012); imagination

(Browett, 2012); recall of motor skills (Davenport, 2010); wellbeing (Perrin &

May, 2000) and can also impact on mood (Twigg, 2010, p.226) “…seeing the

pleasure that people can get from smoothing down a skirt or folding paper”.

Some practitioners believe the performance element of narrative arts has a

particular potency, allowing people’s personalities to emerge, when


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Photo credit: Arthur+Martha

"The Spiral, the strength of steel, your mind is unwinding - like steel, gradually unwinding, from one side to another, thats how I see it - that would express everything to me." Sylvia Piggott. http://arthur-and-martha.blogspot.co.uk/2010_09_01_archive.html

Figure 1 Arthur+Martha (2010) (with permission)

expressed through music and singing (Hammar, Gotell & Engstrom, 2011) or

dressing up as part of dance and drama (Activehearts, 2010; Hayes, 2011;

Hearts & Minds, 2012). In contrast, touch screen technologies provide

access to apps and memory books for both visual arts and life story work,

providing an alternative approach with new multimedia opportunities (Life

Story Network, 2011; Memory Apps Partnership, 2010). Salmagundi Films

(2011) work with care home residents and staff to make digital portraits using


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stop frame animation and significant objects to relate stories.

Memories in the Making® (2009) is an art programme in the USA breaking

new ground in a very simple way claiming to affect memory and generate a

sense of identity. Activities are focused on giving people with dementia the

opportunity to do artwork that connects with their previous skills and interests.

Shawna Sacan, co-ordinator for a Memories in the Making® group in Northern

California (Wilson, 2010), provides some insight into the power of art to

communicate an individual’s identity:

They can tell their story and express things that otherwise would not be asked about…For some it's getting recognized for the first time in many years…a memory that has sat dormant for years…helps participants regain their ability to communicate (Wilson, 2010).

Ryan & Martin (2011) describe how the participatory process of any narrative

arts intervention should be meaningful for the person with dementia and have

some relevance to their own life. It is claimed that this can be achieved in

both group reminiscence activities (Cutler, 2009; Mental Health Foundation,

2011) and individualised interventions such as life story work (Gibson, 2011).

Hayes (2011) suggests that the relationship between people engaged in a

shared activity is significant in itself, “Sitting with someone, quietly making is a

healing experience…” (Hayes, 2011, p97).

Apart from participating in the process of art making, it is argued that the

product of an arts activity can also be beneficial to care practice. Ryan &

Martin (2011, p.5) refer to examples of collage, poetry and “Conversational


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remembering boxes” being used to engage and calm care home residents

while dressing or when a person is agitated and distressed, while Chatterton

(2011) prefers to use singing as a creative tool during care. Effective

communication is a key element of good care practice and Hagens, Beaman

& Ryan (2003 p.109) employ various narrative arts interventions to converse

with care home residents and provide more person-centred care “…with

increased information, staff became less concerned with changing the

behaviours of the residents and more inclined to examine and alter their own

behaviour”.

Gibson (2011, p.30-31) also believes that participatory reminiscence

activities, which produce creative narrative artswork ”…translating mental

images into…poetry, drawing…dance or some other communication

medium…” can contribute significantly to improving care practice by making

aspects of people’s lives and interests more accessible to care staff. Murphy

(1994) believes that such interventions can alleviate distress, as healthcare

staff are better equipped to manage challenging behaviour and also prevent

residents with dementia retreating into depression. McKeown, Clarke &

Repper (2006) however, report some barriers to undertaking such narrative

artswork including lack of staff resources and ethical concerns should

residents become distressed by bad memories. Kolanowski & Beuttener

(2008) cite the importance of finding out about a person’s personality type,

separate from any character change from their dementia (Dementia Guide,


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2013), which helps engagement of people who are passive and at risk of

further decline and depression.

The literature suggests three aspects of narrative arts interventions that could

have a particular impact on care practice: Firstly, by helping residents to

express and maintain their identity; secondly, by providing care staff with a

better understanding of the individuality of residents; and finally, by supporting

communication strategies that promote relationships. In these ways the

narrative arts approach can offer an alternative to the use of antipsychotic

drugs that are prescribed to manage the behavioral and psychological

symptoms of dementia (BPSD) as described by Douglas, James & Ballard

(2004).

Guidelines for good practice, produced by NICE & SCIE (2006, p.17) advise

that structured social interaction should be first explored to avoid excessive

use of medication, recognising the significance of “…respect, dignity, learning

about each person’s life story, individualising activities, being sensitive

to…cultural identity, and understanding behaviour that challenges as a

communication of unmet need”. In 2011 the Department of Health

announced the arrival of a new ‘best practice guide’ (Alzheimer’s Society,

2011b) on the management of BPSD in response to findings in Banerjee’s

(2009) report of antipsychotic medication use in dementia care. The guide

includes recommendations for care plans to include psychosocial

interventions such as “…10-30 minutes of daily one-to-one conversation or


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activity based on the person’s interests, hobbies, history and ability…”

(Alzheimer’s Society, 2011b, p.16).

Ryan & Martin (2011) provide a nursing and psychology perspective on how

participatory narrative arts activities can be used in a meaningful way,

believing that healthcare staff can incorporate these initiatives into their care

practice with:

…all members of the health care team capable of facilitating the development of narrative art forms that would then serve as a consistent basis for care interventions. The art forms are living documents representative of the person’s desires, hopes, dreams and past lives, and directly guide and inform the development of caregiving plans… (Ryan & Martin, 2011, p.13).

Narrative arts interventions could be the answer to the plea “How do we

respond to the collective voice that says, "I want to be me!”?…” (Kolanowski,

2011, p.5). The literature indicates that current research has yet to

demonstrate the power of such interventions to fully contribute to dementia

care. McKeown, Clarke & Repper (2006 p.239), in their review of the

practice of life story work, report on the need “…to capture the voice of the

service user...”. They also highlight the need for research to evaluate the

various methods used to represent a person’s life, which would not only show

the impact on relationships but also “…upon staff attitudes and the

subsequent care given…” (McKeown, Clarke & Repper, 2006, p.246).

Both Kolanowski (2011) and Vittoria (1998) believe that giving people a

means of expressing their sense of self is critical for a good QoL but the


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challenge now is to discover how best to achieve this. McKeown, Clarke &

Repper (2006) indicate that there is a need for more easily accessible care

interventions, which can be incorporated into routine care practice and for

robust evidence demonstrating what works well and how it works.

The literature reveals the wide extent of interest in narrative arts interventions

for people with dementia yet with few studies showing the full impact on care

practice. Ryan & Martin (2011) suggest new research needs to show how all

care staff can embrace a person-centred approach in daily care practice

using narrative arts interventions. There is a need for clarification showing

how this approach can contribute to sustaining identity, enhancing

communication, relationships, QoL and wellbeing and the influence on care

practice.

In summary, the literature review began by outlining current challenges to the

provision of good QoL in dementia care homes. Differing perspectives on

QoL were explored followed by a discussion about person-centred care. The

relevance of narrative arts interventions to QoL for residents in care homes

was reviewed, with reference to skills that community artists can contribute,

concluding with a rationale for further research within this field.

This research project therefore addresses two main questions arising from

the literature review. These are firstly to ask: In what way do participatory

narrative arts interventions contribute to a greater recognition of the


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individuality of people with dementia? and secondly: How can this approach

impact on care practice and contribute to improving QoL?

In the next chapter I outline the research approach chosen to examine this

subject and describe the methods used to collect and analyse data, exploring

how various narrative arts interventions influence care practice.


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CHAPTER 3 – METHODOLOGY

In Chapter 2, I presented a summary of the literature highlighting some of the

problems seen in residential care homes and the move towards more person-

centred care approaches that increase the QoL and wellbeing of residents.

The evidence for the benefits of participatory arts was made showing how this

approach can improve communication and the social relationships of people

with dementia. However the link between these issues, creativity and person-

centred care, is unclear. Still less is known about the impact of a creative arts

approach, specifically the contribution of narrative arts interventions, on care

practice in dementia care homes.

In preparation for this research I first carried out two pilot studies (Young,

2009; 2010). Denscombe (2010, p.143) cites the value of pilot studies to gain

an overview of a subject and help with selecting a sample population to study

“…information from one method can be used as the basis for selecting a

sample of people who will participate in the research through a different and

contrasting method…”. The first pilot project used a qualitative approach,

influenced by action research, to test and develop an original narrative arts

intervention in dementia care. The second pilot study, a quantitative survey

of EMI care homes in Staffordshire, showed fewer dementia care homes (5%)

reaching excellence in the care standard for social and recreational activities

when compared with other old age homes (42%). Both studies revealed

challenges in dementia care research and highlighted the need for further


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qualitative studies that include a range of perspectives such as the views of

artists, healthcare staff, care home residents and their relatives, in order to

discover more about ways that dementia care can be improved.

In this chapter I discuss what has influenced the methodological approach

chosen for this study and present the reasoning behind the selection of

specific methods and tools. The methodology outline begins with my

research strategy and how this reflects the aims and objectives of the project.

This is followed by an account of the fieldwork undertaken to collect the data

recognising a range of ethical and practical challenges. The methods and

tools used for data collection and analysis, including processes used to

ensure the validity and reliability of the research, are discussed ending with a

review of the limitations found with the chosen methodology.

RESEARCH STRATEGY

The aim of this research project has been to evaluate how narrative arts

interventions can impact on care practice and improve the QoL for people

living with dementia in care homes. The research questions for this project

focus on how narrative arts interventions contribute to a greater recognition of

the individuality of people with dementia and the impact of this on care

practice and QoL for care home residents.

The research strategy entailed using two qualitative approaches to gather

data. A secondary research approach was used in the first phase of the


27

study with a survey of Care Quality Commission (CQC) Inspection Reports

available online (Care Quality Commission, 2011). The purpose in reviewing

this web data was to establish a context for the study and gain some

perspective on the prevalence of both narrative arts interventions and the

person-centred care approach in dementia care. The second phase of the

study involved a series of informal semi-structured interviews, conducted with

a diverse range of participants, to learn about their experience of participatory

arts activities and care practice in EMI residential care homes. The main

objective being to establish whether these activities contribute to making care

practice more person-centred.

It was important to select a research strategy that would give some insight

into the less familiar complexities of dementia care and so provide detailed

data relevant to the research questions. The choice of a qualitative research

approach was motivated by the need to obtain data that reflect direct personal

experiences from several different perspectives. Mason (2002, p.3)

discusses how qualitative research looks at “…meaningful elements in a

complex – possibly multi-layered and textured – social world”. The flexibility

and richness of the data distinguish qualitative research from quantitative, the

latter being more appropriate to obtain statistical information. Olsen (2012,

p.85) cites an important limitation of the quantitative approach where “…the

respondent is objectified…” in the drive to obtain raw facts. This approach

would give an overall view of dementia care but with no detail as to why

problems exist and would not provide the kind of information needed to meet


28

the key objectives of this study. My aim was to obtain insight into individual

experiences of dementia care in order to better understand the issues

involved.

A qualitative research approach was therefore the most appropriate for this

study as it was possible to generate detailed data from individual sources to

illustrate many different viewpoints including “…subtle nuances in attitudes

and behaviours…” as described by Babbie (2007, p.312). Using secondary

data together with semi-structured interviews promised a rich collection of

material from different sources to help challenge bias, judge validity and test

reliability. Gibson (2004, p.422) argues that “Qualitative methods have

improved our understanding of the experiences of people with dementia…”

indicating how this approach could contribute valuable insights to the study.

METHODS USED

Phase one involved accessing secondary data for analysis. The decision to

use data originally obtained for the purpose of inspecting and reporting on

care homes, allowed me to gain a broad overview of many more homes than

could be visited within a small-scale study such as this. The web-based

survey also generated a different viewpoint to those of the planned interviews.

The secondary data represented the standard policy, regarded as good

practice with which all care homes are expected to comply and is based on a

quality ratings system used in 2009 (Care Quality Commission, 2009) prior to

changes made in 2010 (Care Quality Commission, 2010a; 2010b).


29

Phase two comprised of fieldwork interviews with a wide range of people with

different experiences of dementia care. The adaptability of semi-structured

interviews was a valuable method of data collection, providing the opportunity

to obtain material with sufficient detail to explore the research questions. It

was in this way possible to gather the opinions of people with different

backgrounds and experiences all exploring the same complex subject.

Questions could be adjusted and answers expanded, resulting in an

abundance of data with some surprising outcomes since this method

“…allows for the discovery or elaboration of information that is important to

participants but may not have previously been thought of as pertinent…” (Gill

et al., 2008, p. 291).

The informality of semi-structured interviews also enabled the power balance

in conversations to be more equal than with more formal approaches.

McCartan, Schubotz & Murphy (2012, p.4), speaking of qualitative research,

note that “One of its strengths is often seen in the way of redistributing power,

enhancing the role of the researched and a means of hearing society's hidden

voices”. As a feminist researcher Finch (1984) warns of the ease with which

women talk to other women, bringing particular ethical and political issues

and responsibilities to qualitative research. As all but one of the interviews in

this study were with women I recognised the need to develop a reflexive

research approach, as described by Alvesson & Skoldberg (2000), and

acknowledge my own influence as a female researcher on the discussions.


30

Mason (2002, p.66) considers the challenge of being “…active and reflexive

…rather than a neutral data collector”. Gibson, et al. (2004, p.423) cite the

benefits of this type of qualitative research “…reflection is encouraged,

opening up new lines of enquiry.” The semi-structured format allows for

informal conversations to develop resulting in people feeling relaxed and

being very open about their views. The interviewees were assured that their

contributions would be kept confidential, trust is important as noted by Finch

(1984) and participants needed to know that their views would be represented

honestly and used only for the purpose of the research.

Introducing myself to interviewees as having had some personal experience

of dementia care also helped to equalise any power imbalance during the

interviews, which perhaps encouraged people to speak more candidly about

their own experiences. McCartan, Schubotz & Murphy (2012) noted this as a

benefit of peer-led research and believe that it is particularly relevant when

interviewing people who might consider that their opinions are of little

consequence, so they can see that their contribution has been of some value.

I have outlined the chosen research strategy and the rationale for a qualitative

research approach. I will now outline the process of data collection used for

the study. This describes who was involved in the study, what data was

collected, when and why certain approaches were used. The study

presented some particular ethical issues, which are summarised including

details of how participants were accessed for interview and the process of


31

gaining consent.

DATA COLLECTION

Information for secondary research analysis was compiled as the first part of

the study to identify data relevant to addressing the research questions. The

CQC online directory of care services (Care Quality Commission, 2009)

provided a convenient tool to source the secondary research data, which

focused on EMI residential care homes in the Staffordshire area. Using a

purposive sampling approach as described by Kelley et al. (2003) a total of 14

private care homes were selected, representing 21% of the 66 dementia care

homes found in Staffordshire within a specific 10 mile radius. Only those

reports with failings in care practice were reviewed and a further selection

process isolated those with recommendations for improvements to Standard

12. This is the standard for ensuring ‘Social Contact and Activities’ and

represented the views of CQC inspectors regarding improvements needed to

achieve more person-centred care (Appendix 3). Since October 2011 the

CQC have introduced a different system of reporting on care service

standards and no longer use this method (Care Quality Commission, 2013).

The fieldwork component of the study, involving semi-structured interviews,

was conducted over a period of three months between May and August 2011

and began with contacting a diverse sample of people with different views on

dementia care and gaining their consent prior to interview. The interview


32

subjects were accessed via care homes, from personal contacts and through

an online forum relating to life story work and dementia.

Initially a purposive sampling approach was planned and used to locate

suitable people for most of the semi-structured interviews. In practice this

evolved into a snowball sampling approach as in some instances I was

referred to further people for interview. Convenience sampling led to my

neighbour representing the viewpoint of a relative (Denscombe, 2010). The

purposive method of sampling is described by Babbie (2007) as the most

likely to provide useful responses and is adequate for “…general comparative

purposes...” (Babbie, 2007, p.184). Mason (2002) cites more specific benefits

of this approach, which allows for a review and adjustment based on

knowledge gained as the study progresses.

Mason (2002, p.134) also cites the benefits of including “…complex sets of

experiences…” and comparing these to find meaning in data. The decision to

include interviews with speech and language therapists arose from the

literature review, which highlighted the significance of good communication

and relationships to QoL (Hagens, Beaman & Ryan, 2003). They also, with

occupational therapists, promote life story work as a practical initiative to

increase wellbeing (Douglas, James & Ballard, 2004). Life story work was a

key topic included in interview questions (Appendix 4). The topics list evolved

from the pilot studies, literature review and secondary data. Ultimately the list

expanded as the interviews developed and different people were recruited.


33

Four EMI care homes were invited to participate in the fieldwork study. Care

managers in two homes consented to be interviewed themselves and also

selected residents who they felt were able to give consent to take part in the

research. Eleven interviews were conducted in total, varying in length from

ten minutes to just under an hour (Appendix 5). Nine of the interviews were in

person and two people were interviewed by telephone. Each interview was

recorded and transcribed, except for one with an activity co-ordinator who

preferred not to be recorded. However, detailed notes were taken during this

interview and the information was treated in exactly the same way as the

other conversations. Mason (2002, p.78) argues that even when interviews

are audio or video recorded that note-taking is still critical, reminding the

interviewer that being “…literal, interpretive or reflexive…” can each reveal

additional data for analysis.

Novick (2008 p.393) examined the bias against telephone interviews, which

can be a low cost alternative to face to face interviews in qualitative research,

citing concerns that “…absence of visual cues could result in data loss or

distortion of data…”. Chapple (1999) warns that it may not be suitable for all

people but found a surprisingly rich quality of data and noted that some

people speak more freely in telephone interviews.

It was useful to first embark on the fieldwork interviews with a neighbour who I

knew personally and who could give me some feedback. This interviewee


34

was approached to represent the relatives’ point of view as she had

experience of her mother attending all four EMI care homes in the local area.

I needed to check that the line of questioning was well understood and

suitable and also review my interview technique. Notes taken at the time

reflecting on this interview revealed several points that could be improved.

Two key issues were to accept moments of silence, allowing the interviewee

to consider their answer, and also to acknowledge that some questions can

provoke difficult memories. Gant, Hetherington & Reynolds (2012 p.4) draw

attention to potential difficulties when stimulating memories “…recognising

this and responding appropriately is part of the ethical implications of

undertaking this kind of work”. Ethics is also referred to by Rubin & Rubin

(2005) who urge interviewers to only ask questions pertinent to their study so

as to reduce any undue distress. As my first interviewee was speaking about

care homes I was due to visit I recognised the importance of reassuring her of

the confidentiality of the interview, that this contribution as all others would be

made anonymous and that the data would be kept secure and safely stored.

There were several ethical issues that need to be considered in this study.

ETHICAL ISSUES AND CHALLENGES

The project was granted ethical approval by the Faculty’s Ethics Committee

prior to commencing with any fieldwork (Appendix 2). One of the initial ethical

decisions taken was to involve people with dementia as part of the study.

There is a strong case for finding a meaningful way to interview care home

residents and include their viewpoints as service users in research especially


35

when evaluating care practice (Audit Commission, 2002; Barnett, 2000;

Goldsmith, 1996; ed. Wilkinson, 2002). Sometimes expectations are low and

there is surprise that people with dementia can contribute to research:

Everybody I have met has been absolutely amazed that I can still talk and still think, even though I have a diagnosis of dementia. They do not understand it… (Great Britain. Department of Health, 2009, p.44).

Gaining access to care home residents to ask if they wished to participate in a

research project, required an acknowledgment of and response to the

concerns of gatekeepers at various levels. Bell (2010) outlines the important

role of ethics committees in ensuring that research is safe and suitable for

those who may be vulnerable but noting also their power to block some

research. Care home managers and residents’ families represent further

levels of gatekeeping as they rightly seek to ensure residents’ interests are

protected. However, each of these stages can be perceived as creating a

barrier to access, resulting in vulnerable people often being excluded from

research (Bell, 2010; Darlington & Scott, 2002; Goldsmith, 1996). Bartlett &

Martin (2002) cite conflicting challenges such as the:

…underlying tension between the opposing notions of ‘empowerment’ and ‘risk’. Whilst…an interview may be experienced as empowering for the participant, it is imperative that the rights and privacy of people with dementia are safeguarded… (Bartlett & Martin, 2002, p.58).

Pratt (2002, p.167) also alludes to the value of gatekeepers, such as care

home managers and relatives, in keeping people safe by “…continuing to

monitor the person with dementia’s safety and understanding of the research

process”.


36

Wilkinson (ed., 2002, p.15) refers to less exclusion with changing attitudes as

new techniques are developed and “… the practical difficulties of how to

include people with dementia are gradually overcome”. Murphy et al. (2005)

discuss the benefits of Talking Mats™ (2013), a low-tech communication tool,

as “…a useful and enjoyable method of allowing frail older people with a

communication disability to express views which they have difficulty

conveying otherwise” (Murphy et al., 2005, p.95). However, they also

recognise the limitations of using such methods, which require careful

management and interpretation. After careful research, the Talking Mats™

(2013) tool was chosen for this study to support the interview conversations

with care home residents and address communication difficulties. Murphy,

Gray & Cox (2007) and Murphy, Oliver & Cox (2010) show that the picture

card symbols not only help support general conversation but also ensure

ongoing consent throughout interviews and encourage autonomy. Allan

(2001, p.112) suggests that “…there is more meaning and pattern to be

found…” when interactions with people with dementia are handled with

sensitivity and reflection.

The researcher undertook a one-day training course in the use of Talking

Mats™ (2013), run by the University of Stirling to learn how best to interview

people with dementia. The training also contributed to decisions about how

best to obtain informed consent from care home residents (The Mental Health

Act 2007; Great Britain. Mental Capacity Act 2005). Only those residents

deemed to have the capacity to consent were invited to participate in the


37

project and their understanding of the purpose and ongoing consent was

checked during the interview (Dewing, 2002). Following each interview, using

the Talking Mats™ (2013), residents and care home managers were thanked

and given a photographic record of the conversation as represented on the

completed mat.

In preparing to interview people with dementia it was useful to look at other

studies based in care homes. Wilkinson (ed., 2002) provided excellent

guidelines regarding ethical issues and Powell (2007) advised on

communication strategies. Mowery (2009) advised on the importance of

making sure the interview process was flexible and included both closed as

well as open-ended questions to reduce demand on the interviewee.

Recommendations also included recording general observations so that any

distractions could be noted as possibly having some influence on the

interview result.

Dewing (2002, p.167) cites the importance of place when interviewing people

with dementia “…dialogue will usually need to be carried out in the setting

that is relevant to the research. For example, if the research is about the

person’s experiences or evaluations of a service it needs to be in that service

setting.” It was important to assure the residents during the interview that

they could stop at any time. One resident who had dementia readily agreed

to participate and was supported by the activity co-ordinator, with the care

home manager also counter-signing consent. A resident, from a different EMI


38

care home, did not have dementia but had lived in psychiatric care for over

twenty years. I knew him from his regular participation in activities run by a

local community arts group so he was very comfortable with participating.

Additional consent was obtained from the care home manager and the

interview was conducted in the dining area with care staff available but not

sitting directly with us.

The interviewees were each given an information and consent form to read in

advance of the interviews and the opportunity to ask further questions before

signing their agreement to participate. The forms were designed to be

accessible and easy to understand. The process of consent also needed to

be carefully managed for the telephone interviews, where it was necessary to

obtain signed consent in the post prior to these interviews taking place. Care

was taken to ensure that participants fully understood what the research

project entailed, including the limitations and scope of the study. All

participants were assured that they could withdraw consent at any time.

It was essential to ensure that each interviewee was not disturbed by any of

the questions asked or left uncertain about what they might have revealed in

the interview. Each interview was concluded with a clear appreciation of the

interviewee’s contribution giving them the opportunity to ask further questions

of the researcher should they so wish. The interviewees were asked if they

wished to be informed about the results of the research project and also to

receive a copy of their interview comments. In the event none requested


39

copies of the transcripts but three asked if they could keep in touch,

expressing an interest in the results of the research. The interviewees were

asked to provide minimal information to complete their consent forms, basic

contact details only were gathered. It was considered that age and gender

information was not directly relevant for the purposes of this study. The data

gathered represented individual viewpoints and experiences of care home

activities, life story and arts work.

All the data have been stored anonymously, both in digital format and on

paper. The storage and access of information is managed through a number

coded referencing system, with attention given to security and the accurate

retrieval of data. Direct assurance was given to participants of the

confidentiality of their contribution and the security of their identity so that they

could not be personally recognised from the data produced, unless they

chose to do so. It was made clear verbally and in writing that the participants

would not be identifiable from the report as all research data are transcribed

and filed using pseudonyms and coding. Participants were also told that the

data, including contact details, would be used solely for the purposes of this

research project and securely stored for five years after which time it will be

destroyed. The data collected from interviews and secondary research was

in raw form and so needed to be transcribed, indexed and coded ready for

analysis.


40

FRAMEWORK FOR DATA ANALYSIS

The process of data analysis began with the research questions and the

study’s key objectives, which are two-fold: Firstly to identify how participatory

narrative arts interventions contribute to a better recognition of the

individuality of care home residents; and secondly to explore the impact of

such interventions on care practice.

Table 1 Framework for data analysis

FRAMEWORK FOR DATA ANALYSIS

DATA COLLECTED AND TRANSCRIBED INDEXING AND THEMATIC CODING

Management issues

Activities and interventions

Person-centred care

Impact on care practice Challenges

SORTING AND SUMMARISING

Patterns Similarities and differences

Referencing themes Ranking Missing

themes INTEGRATED ANALYSIS

Test and check data

Interpretation of findings

Refer to lit review

Develop theories

Identify gaps

REPORT AND DISSEMINATE (Rubin & Rubin, 2005)

The methods used in this study for examining the data incorporated a detailed

thematic analysis approach of both the secondary research data and

interviews (Table 1). The data extracted from CQC inspection reports and

interviews were transcribed and indexed. The strategy adopted for analysing

the data focused on the research question. Mason (2002) warns of the

challenges with using a variable analysis approach in qualitative research.

Instead, I moved towards seeking relationships between data sets. In


41

particular I looked at the extent of life story work, the type of participation in

creative activities and the impact on care practice. Seeking to identify factors

within the data indicating trends or themes, I focused on interpreting the

results to find patterns and anomalies. The characteristics of positive care

interactions, as listed by Kitwood (1997a) (Appendix 6), were used to identify

person-centred care practice and these formed part of the thematic coding

applied to all the data collected.

CHALLENGES AND LIMITATIONS

In reviewing my research process, including sampling, data collection and the

framework for analysis, I found several difficulties and limitations. The small

sample of people being interviewed meant that bias would be one issue of

concern. Ideally, data should be gathered from a diverse demographic

profile, including a representative percentage of men and women in a variety

of age groups and from differing socio-economic backgrounds. The range of

data in this study may be small but represents diverse viewpoints suitable for

comparison. The challenge in this study is not so much the risk of presenting

viewpoints atypical of the wider population but the potential bias of the

researcher, as warned by Mason (2002) and Corben (1999), who may select

to only interview people who would support their viewpoint. It has therefore

been important to recognise the risk of bias and respond to such issues to

ensure that the research is robust. As an arts practitioner, I have reflected on

my own potentially biased perspective, not only in preparing questions and

interviewing people for the study but also in the analysis of data. Bell (2010,


42

p.170) warns against seeking only the evidence that supports an established

opinion advising researchers to check if they “…had overweighted any

facts…”. Being conscious of this it has been necessary to review and

challenge some preconceived views on the subject and adjust how I planned

to analyse my data. For example, I have endeavoured to test and re-analyse

data in different ways in order to verify the findings.

The study has been designed to acknowledge and respond to issues of

reliability and validity, yet this has also not been a simple process. Mason

(2002, p.187) observes how demonstrating reliability in qualitative research is

more challenging than in quantitative, which uses a “…standardized set of

measurements…” where the evidence of robust process is inherent in the

method used. Holding a detailed record of the processes involved in

gathering data increases the reliability of my research findings. All the

datasets collected for analysis have been safely stored, including audio

recordings and transcriptions of interviews and are accessible should the

study need to be replicated.

Comparing one representative group with another provides a range of data,

which should contribute to validating the research results as it incorporates

diverse viewpoints. Yet the study is limited in size so as advised by Babbie

(2007) I decided to use two different research methods, both secondary

research data and a broad range of semi-structured interviews, to gather

material in different forms to test the results. Whilst the literature review and


43

pilot studies also help to triangulate the research findings and support the

validity of this piece of research, Mason (2002, p.190) points out that

“…different methods and data sources are likely to throw light onto different

social or ontological phenomena or research questions”. I will identify some

of the limitations found with this study in Chapter 6 and outline further

research indicated that would increase the validity of these findings.

In this chapter I have outlined my approach to this qualitative research. The

range of methods was designed to include different perspectives, including

those of care home residents. Ethical considerations have been paramount

and I have tried to work reflexively. I have highlighted both the strengths and

limitations of the methodological approach and outlined the proposed analysis

of the data. In the next chapter I will discuss the findings of the research and

relate them to the research questions.


44

CHAPTER 4 – RESEARCH FINDINGS

Following the research design process explained in Chapter 3, this section

provides an outline description of the results from both my secondary

research activity and the fieldwork undertaken. Together these represent the

data collection findings part of this study, the analysis of which will be

discussed in detail in Chapter 5.

The research findings directly address the questions that I set out to explore

in evaluating the impact of participatory arts on dementia care. My objectives

were to observe how narrative arts interventions contribute to a better

recognition of the individuality of people living with dementia, with positive

outcomes in care practice. Although there is some evidence that care homes

make attempts to find out about each resident’s background history, including

their character and interests via life story work, my specific interest was to find

out if this knowledge transfers through into changes to care plans and

impacts on the QoL for residents.

My first approach was to look at the context and see how the care practice

complies with legislation in particular Part 4 Regulation 9 of the Health and

Social Care Act 2008 (Appendix 3), which states the principles for the “Care

and welfare of service users” (2010, 781, p.6) and Regulation 17 “Respecting

and involving service users” (2010, 781, p.9-10). Essential standards state

that residential and nursing homes should provide care for older people that


45

“…promotes their wellbeing by taking account of all their needs, including:

physical, mental, social, personal relationships, emotional [and] daytime

activity” (Care Quality Commission, 2010a, p.64). In seeking whether

narrative arts interventions can contribute to meeting these criteria, I looked

for ways in which participation in life story work and creativity might influence

the recognition of people’s needs and interests affecting social interactions,

relationships, a sense of community, expression of autonomy and personal

identity. Beginning with the secondary research data on EMI care homes, I

analysed how this information reflected significant aspects of person-centred

care as outlined in the regulations.

SECONDARY RESEARCH DATA

The fourteen inspection reports extracted from the Care Quality Commission

website comprised of all those with recommendations for care improvements

in Standard 12 for ‘Social Contact and Activities’ (Appendix 3). All residential

care homes are expected to meet this standard:

Service users find the lifestyle experienced in the home matches their expectations and preferences, and satisfies their social, cultural, religious and recreational interests and needs (Care Quality Commission, 2009).

All fourteen reports with recommendations were indexed using a thematic

analysis approach with extracts from secondary data (SD) grouped under four

broad themes: Management; Identity; Autonomy; and Impact (Appendix 3). In

order to measure the significance of each grouping to QoL for residents,

these were then linked to positive care interactions as described by Kitwood


46

(1997a) (Appendix 6). In this way I was able to see certain patterns and

differences, such as the prevalence of comments related to the need for more

individualised care practice and variety of activities. Concerns about lack of

empowerment were mentioned twice and the importance of maintaining

community links once. Each recommendation related specifically to social

and recreational activities apart from the two with suggestions concerning

respect for autonomy. One of these referred to choice regarding rising and

retiring times while another suggested that the care home set up a residents’

forum, which would empower residents and enable them to participate in

decision making. The recommendations were generally directed at

management issues, including requirements for the employment of an activity

co-ordinator and more staff time allocated to support social activities.

A common factor in all the failing reports was the poor recognition of people

as individuals, which relates directly to my first research question.

Recommendations called for “…a more detailed profiling of people’s lives to

be obtained at admission assessment as a basis for individualised social

care” (SD-4) and for care records to “…identify people’s interests to form the

basis for a social needs plan of care” (SD-2). Of the fourteen reports

reviewed ten referred to this particular issue.

Concerns about the limited range of activities, lack of choice and disregard for

people’s preferences and capabilities all indicate a need for more person-

centred care approaches. The recommendation from one inspector calling for


47

the “…development of creative ways of providing activities including for those

with disabilities…” (SD-5) suggests that some people with a physical or

sensory disability were excluded from participating in activities.

Fieldwork data obtained from interviews build on these findings showing

similar difficulties with providing meaningful activities that recognise people’s

individuality. The interviews also revealed some of the barriers that contribute

towards decisions about interventions. Despite these challenges there were

also examples of good creative care approaches.

FIELDWORK DATA

The fieldwork included interviews with two residents, one relative and care

staff from two care homes. Therapists and arts practitioners who were also

interviewed work in various settings, NHS hospitals, in the community and in

care homes in the private sector. One speech therapist undertook life story

work with clients and ran a regular SonusTMapc (2011) activity on a dementia

ward. A healthcare worker on a NHS dementia ward provided an alternative

viewpoint on dementia care practice for comparison with the care homes.

The list of people interviewed and duration of sessions can be found in

Appendix 5.

Although I used Talking Mats™ (2013) (Figure 2) with both resident

interviews the first conversation was short and focused while the second

resident, who had dementia, was easily distracted and spoke of other things


48

apart from activities. However, with both residents I gained an informative

picture of their interests in current and former lives with some additional

stories revealing aspects of their characters.

Photo credit: V. Young

Figure 2 Care home resident interview using Talking Mats™ (2013)

The first resident showed a particular passion for going to rock and roll

concerts at the theatre, recalling a time when “…we’d sing along, we’d call for

‘more, more!’…they’d do encores sometimes” (Interview-3). The resident with

dementia had very fragmented speech and when asked if she enjoyed having

her hair done said: “Not really, because the girl that was doing it, she was a

good girl…I enjoyed her doing my hair it was lovely…[different girl now?] Yes,

to be able to tell her…how…I’m wanting it” (Interview-7), clearly referring to


49

problems communicating with her new hairdresser. The comments are

significant because Talking Mats™ (2013), by stimulating conversation,

represented features of a narrative arts intervention. Although the residents’

were able to still enjoy some of their interests, they each spoke about

activities they missed. I was keen to find out through further analysis of the

fieldwork how people are recognised as individuals in dementia care.

Common themes that emerged from all the interviews included the

importance of identity, communication and relationships, the significance of a

multi-sensory approach, finding a sense of community and influences on

wellbeing. I will now address each of these themes in more detail with

examples from the fieldwork, beginning with personal identity. Table 2 shows

a summary of the fieldwork findings together with key issues from the

secondary research data.

Validating the person

The interviews revealed many ways in which a person’s individuality, identity

and feelings can be validated. Some people referred to skills and

experiences, while others spoke of acknowledging a person’s viewpoint. A

therapist doing life story work was able to validate the individuality of her

client by searching for images that related to where she worked, reasoning

that “…she can get these glimpses all the time, these prompts of what she

did…build up conversation through just this one picture” (Interview-4). One


50

care home manager described her discovery of a resident’s hidden talent,

overhearing someone say:

‘Oh I know that lady she…made amazing cakes!’…we thought well, wow let’s start that, let’s see what happens and yes, we found it was quite natural for this lady to bake without even thinking and she’d teach the staff, or tell the staff off for whipping too much! (Interview-2).

Table 2 Summary of research findings

SUMMARY OF RESEARCH FINDINGS

KEY ISSUES FROM SECONDARY RESEARCH DATA RECOMMENDATIONS FOR IMPROVEMENTS IN CARE PRACTICE

Collect detailed profiling of people’s lives and interests Develop more creative approaches to activities

Provide more meaningful and stimulating activities Reflect people’s needs, interests and capabilities

More activities with greater range Ensure autonomy and respect

KEY ISSUES FROM FIELDWORK INTERVIEW DATA

POSITIVE INTERACTIONS CHALLENGES AND ISSUES

Validating the person Communication and relationships

Multisensory approach Sense of community

Influence on wellbeing

Inaccessible information on residents Dementia symptoms and mood

Lack of quality time with residents Low staffing and limited training Lack of funding and resources

IMPACT ON CARE PRACTICE

Assessment Behaviour management

Communication and relationships Staff attitudes


51

Being given the opportunity to actively participate in an activity allows for

unexpected expressions of self, such as the resident who “…will sing

absolutely everything, she knows all the words…” (Interview-6) or the lady

with dementia who was interviewed revealing how she loves babies “I’ve

knitted nice cardigans…Oh, it was beautiful. Oh he was, fit in me hands like

that…Oh he’s lovely, lovely” (Interview-7).

The significance of honouring people’s own words was highlighted by a

therapist, who felt that elements of someone’s personality could be captured

by including their expressions:

…they might want to call their book something like ‘Every cloud has a silver lining’ because that says everything about…their approach to things in life…the way they put something…you know exactly what they mean…those comments have been something that has shown more about a person than anything…just like a turn of phrase (Interview-10).

An arts practitioner spoke about writing a poem following her creative

reminiscence session specifically for a lady in one care home who had been

stimulated to talk about an early memory. The poem validated that person’s

memory and was given to her as a gift:

…she’d worked in the cotton mills in Lancashire, she called over at the end of the show and she said…‘I bet you weren’t woken up to the sounds of clogs on cobbles’ and that’s what she was woken up to every day…so I’ve actually written a poem called ‘Clogs on Cobbles’ (Interview-9).

Showing respect through negotiation also validates a person’s identity. One


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interviewee spoke about a particular resident who was often reluctant to join

in:

…if you ask her ‘Are you coming in for a sing song?’ ‘No, I’m tired’ but then eventually she’ll come in and she sings her heart out so I’ll put the microphone on her…and she’s singing ‘Daisy, Daisy’ with a smile on her face… (Interview-8).

The focus of a creative activity was often to encourage shared participation to

build relationships, motivate people to get into conversation and enjoy each

other’s company. A therapist spoke about the benefits of life story work and

narrative arts interventions, not only for residents but also for relatives and

care staff in helping with communication and relationships: “Life story work

…needs help to be spread…once a few people see the positive effects it can

have a bit of a ripple effect” (Interview-10). Several people spoke about

contributions from relatives when gathering information about residents’ lives

and interests. There were examples of this influencing the kind of activities

on offer, prompting social interactions: “…if someone spoke to her…even

through all her dementia, she could still hold a good conversation” (Interview-

1).

Communication and relationships

A care manager in one home observed people chatting in groups noting how

care staff get into conversation with residents more easily having some

knowledge of their backgrounds:

…it’s certainly beneficial to both residents and to staff…because I think if you don’t know somebody you can draw an opinion of them…but until you’ve actually spoken to them…you maybe think…I never


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would’ve thought that that person would have been into… (Interview-6).

One arts practitioner spoke about the benefits of having people outside the

care home community coming in with new ways to motivate residents to

speak about their own lives “…we come in with fresh ears and maybe with a

different approach to a conversation and also working in a group stimulates

different conversations and different memories as well” (Interview-11).

Outlining the benefits of working in small groups with people of similar ages,

the same interviewee described how people stimulate each other making

comments that can trigger memories:

…we can start off a conversation but once that conversation is started it’s their conversation and they’re the ones who lead it and they’re the ones who’ll take it in the direction they want (Interview-11).

The benefits of group work were also mentioned by a therapist and a

healthcare worker, who spoke about a narrative arts intervention called

SonusTMapc (2011) used to stimulate communication. The multi-sensory

aspect of the activity uses a structured approach to focus on people’s

abilities. An arts practitioner spoke about developing various techniques to

facilitate conversations: “…we also do a lot of repetition…if somebody is

talking…and they stop mid flow…rather than…asking a direct question, we’ll

just repeat what they say. That way they’ll often elaborate on it” (Interview-

11).


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Some of the people interviewed gave examples of using photographs, poetry

or song to engage with residents. A care manager described the social

benefits of activities such as an exercise class or handicrafts “…lovely little

group…they’ll all sit together and you can hear them talking about what

they’re doing and ‘Oh, can I have that colour after you?’…they interact well

with one another” (Interview-6). In all these cases the activity prompted

conversation and often laughter. Another common element noticed in many

of the creative activities was the appeal to different senses, seen to make an

activity more accessible to some participants.

Significance of a multi-sensory approach

Interviewees talked about the therapeutic benefits of a multi-sensory

approach, which also stimulated memories. A healthcare worker related how

participants enjoyed the sensory aspects of a SonusTMapc (2011) activity and

also in reminiscence sessions:

We sometimes Brasso the brass ornaments. The staff put the Brasso on for them and the patients polish them off. We open the windows as the Brasso is a strong smell…but they need the smell, that’s part of the reminiscence (Interview-5).

In one home a multisensory approach was taken with some activities in

response to the particular interests of residents, many of who were from rural

farming communities. These events included animal therapy such as a horse

brought into the courtyard on several occasions, staff from a local zoo brought

owls after discovering one residents’ interests “…he absolutely loved

wildlife…so we got in touch with them” (Interview-6) and two different artists


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regularly presented themed reminiscence shows using music and projected

images. The care home manager spoke about one intervention that included

a video related to farming life with “people ploughing a field with a

horse…then he’d say ‘Oh, does anyone know where this is?’ Somebody’ll

shout out ‘That’s such and such’” (Interview-6), the focus of the activity being

to stimulate memories and encourage conversation. One resident who was

blind responded well in another session: “…we did ‘Radio Times’, which has

got all these signature tunes and she knew virtually every one and the carer

who was sitting with her was in tears because she’d never heard her say so

much” (Interview-9). The activity prompted discussion about what people

might be doing while listening to these programmes at work or at home, such

as washing clothes.

An arts practitioner also talked about the value of handling objects, having

something unusual to focus on, “…we’ll talk about all sorts of different

things…with props…whether it’s photographs or real objects to help and to

hold is really, really useful” (Interview-11). The purpose being to encourage

conversation through a shared recollection of memories:

…it could be a smell…something you can…touch, these kind of stimulus are really useful and then we’ll just start a conversation… (Interview-11).

Being open to new possibilities and connections, was also discussed: “Never

underestimate people. Just because they’re old, yeah, doesn’t mean to say ‘I

don’t want to try different things’” (Interview-11). Care staff and relatives are


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often surprised at how much people with dementia can still participate when

they have watched their decline. An arts practitioner recalled a reminiscence

activity in one care home: “…this lady…hadn’t spoken for quite a long time, I

think it was the African Queen pictures and she said ‘Katherine Hepburn’ and

they were all looking at each other in amazement…” (Interview-9).

One care manager spoke about how she plans activities for the whole year in

advance including some that people can actively participate in and others for

entertainment. Finding the right approach for a wide range of people in a

care home is quite a challenge but her motive was to help the residents feel a

sense of being at home and part of a community.

Sense of community and wellbeing The data revealed particular nuances of social interaction related to a sense

of community and shared wellbeing within the care home. These were seen

as aspects also likely to impact on care practice and QoL. The importance of

motivating one resident to participate in a group activity, was described by a

healthcare worker:

If you didn’t encourage her to come in and join in, she’d just sit in there all day and go to sleep but once she’s actually there doing something she’s really happy, enjoying herself (Interview-8).

Most of the comments referred to benefits of participation in the process of an

activity but there were some people who mentioned the value of seeing the

outcome or product from a narrative arts intervention, such as a memory box


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or wall collage, which provided useful information about a person and

contributed to the shared community ethos. A therapist outlined difficulties

she had with recalling some people’s backgrounds:

…sometimes people have a lot of information sat in the file but you can’t retain it in your head…something that’s visual and has something that communicates and it’s eye catching you kind of can use that then to support your communication with the person (Interview-10).

For residents, relatives and staff having some evidence that there are

meaningful activities going on in the home, such as narrative arts

interventions (Figure 3), appears to have a positive impact on their sense of

place and being part of a lively community. An arts practitioner spoke about

the importance of sharing the outcomes from their creative work with care

staff and family and reflecting this back to the participants as a way to validate

their individual contributions:

…what we’ll do, when we can, is we’ll pin poems or artwork up in the ward…we share them with a wider audience, we put things on the blog, we share them, we always send things to the ward, or to the particular patients…we give back printed out poems…people really do seem to value that (Interview-11).

I found several references to the lasting impact of bringing an arts practitioner

in to work with residents, “…the buzz of doing a bit of reminiscence workshop,

a bit of art workshop, often stays within that ward for longer than you’re

actually there, because the conversations carry on” (Interview-11).

Other social activities in the care homes included singing along with a visiting

musician. Examples were given of a resident strumming his guitar, others

dancing when musicians visited. Some residents, who rarely spoke, were


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able to remember the words to songs. Regular groups included exercise to

music, knitting, arts and crafts. One resident spoke about his weekly routines

and interests, all dependent on being facilitated by the manager. He

expressed pride at being integrated within the care home community and was

given the opportunity to make narrative pictures illustrating his passion for

sports and music, which he could then share with care staff.

Figure 3 The scope of narrative arts interventions found in the data

One of my research questions was to ask how narrative arts interventions

contribute to a greater knowledge of the individuality of people with dementia.

The findings show how this approach can support communication and the

development of relationships, validate a person’s identity and bring a sense of


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community to a care home. The sensory aspect of participatory arts can also

enhance this process contributing to wellbeing. My other research question

was to observe any impact on care practice. I will outline some positive

examples, followed by several challenges to the delivery of person-centred

care practice revealed in the findings.

Positive impact on care practice

The SonusTMapc (2011) activity was seen as a valuable narrative arts

intervention on a NHS dementia ward to assess people’s skills especially

when they are newly admitted: “Patients have an activity sheet in their care

plan, it’s done weekly…in time you can see a pattern…how their condition

changes” (Interview-5). Group activities such as Bingo, which involves

decision-making, were also useful for assessment:

This is a really good activity for assessing skills, you’ve no idea! You can observe when new people arrive, you find out how well they can hear, are they marking off the numbers, dexterity, do they recognise numbers (Interview-5).

Several interviewees mentioned how narrative art interventions helped

demonstrate different ways to manage challenging behaviour. One

healthcare worker noticed how: “Sometimes…singing with a calm voice…”

(Interview-8) can change someone’s mood when people resist help with

dressing. Another resident responded well to Doris Day songs, so the care

staff either sang or played music if they needed to calm him.


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The relative who was interviewed about her mother’s experiences in care,

noticed how another resident often became unsettled, saying that she:

…used to be quite loud and aggressive and wander about but someone would come in…and give her some wool. She’d spend hours just winding the wool…held in this other person’s hand. She seemed to love to do that, it sort of kept her calm (Interview-1).

Concern about how to take care of anxious residents was also mentioned by

a therapist who spoke about the importance of doing life story work and

finding out about people’s interests, to find out how to respond appropriately

when needed “…for everybody there’s usually a topic and it could be even

just sort of their favourite thing…knowing what to do when people are

upset…just being there to comfort them” (Interview-10).

A care home manager spoke about the value of narrative arts work also

affecting the attitudes of care staff to residents “their opinion of them

changes…they see someone sitting there who was actually someone who’s

done something with their life…” (Interview-6). The fieldwork data showed

how narrative arts interventions can contribute to person-centred care

practice but each interview also revealed barriers to the introduction of

participatory arts activities in dementia care.

Challenges

In some cases questions about activities in care homes revealed complicated

issues affecting aspirations, for example gathering information about people’s

backgrounds was a slow process. Both care home managers spoke about


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doing admission assessments when new residents arrive in the care home,

which included asking for life story information from relatives (Appendix 7).

Not all families were willing to provide this initially but they were able to collect

files on some residents. However, in both care homes these were kept

separate from general care plans, with concerns about data protection, so

details about people’s interests and backgrounds were not easily accessible

to general healthcare staff. One interviewee referred to how tailoring

activities to match people’s interests has to be managed carefully, so people

can participate according to their capabilities: “If we asked them to do an

activity similar to their work, because it was something they were once good

at, they feel they’ve lost the skills and don’t want to fail so say ‘No’” (Interview-

5).

Other challenges also related to the clinical aspects of dementia. Many

people interviewed referred to difficulties with the progression of dementia

symptoms in residents. Examples included people struggling to

communicate, appearing to be overwhelmed, confused or uninterested:

…they’re getting more and more demented, they can’t tolerate anymore, they can’t tolerate talking, they can’t tolerate noise, they can’t tolerate somebody sitting close to them…it’s all very sad (Interview-4).

An interviewee spoke about her mother’s problems with participating in

activities once she was less mobile “…she really wanted to be left alone and

just be comfortable and quiet which she was” (Interview-1). Some people

spoke about difficulties when relatives or care staff try and speak for the


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person with dementia, rather than wait for their slower and inevitably less

fluent response. A therapist and an arts practitioner both spoke about the

concerns of care staff when an activity stirs difficult memories, such as

speaking about loss in wartime. This was seen as a potential barrier to

delivering some of the more meaningful activities, which can otherwise help

people with dementia express feelings that affect their wellbeing.

The issue was raised as it was noticed how healthcare staff have so little time

to sit and talk with residents, which would be important should a person be

unsettled by their memories in response to an activity and need to be

reassured. The lack of quality time to talk with residents, low staffing and

limited training, were common factors mentioned in all the settings. Limited

resources and funding issues were also discussed. Despite these challenges

to implementing narrative arts interventions there were many examples of

positive person-centred care practice.

In conclusion, the results suggest there is an awareness of the social benefits

of participative narrative arts and some aspects do transfer through into care

practice benefiting some individual residents with dementia yet the challenges

to implementation inhibit wider adoption. Some of these research findings

reflect aspects of care practice found in the literature review. The research

process has resulted in more questions that need to be explored, especially

regarding communication in person-centred care practice. These issues will

be discussed in more detail in the next chapter.


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CHAPTER 5 - DISCUSSION

The purpose of this study has been to gain some insight into the impact of

narrative arts interventions on dementia care practice, specifically addressing

the two research questions identified in my literature review. In Chapter 4

I outlined the results of my fieldwork, which reflected some of the issues

highlighted in the secondary research. Three topic areas were seen as

particularly significant. These were: personal identity and individuality;

communication and relationships; and a multi-sensory approach. In this

chapter I consider the implications of my study results and examine the three

key issues in more detail showing how they relate to the literature review.

PERSONAL IDENTITY AND INDIVIDUALITY

My first research question was to find out how participatory narrative arts

interventions contribute to a greater recognition of the individuality of people

with dementia. My expectation was that life story information would be

important as it is seen as central to acknowledging identity and developing

person-centred care practice. Ryan et al. (2005) claim that this background

knowledge can help support people’s self-esteem and Murphy (1994) and

Gibson (2011) give examples of good practice. It was clear from the literature

that life story work was seen as an essential part of dementia care with

research and legislative change supporting this approach. Life story work is

referred to in the Dementia Strategy (Great Britain. Department of Health,

2009, p.58) as a useful vehicle for respecting “the individuality of the


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residents”. However, the fieldwork indicated that this approach can be

complex to deliver in a residential care setting.

The secondary research data showed how a lack of life story information on

residents was a key failing in some care homes, indicating possible problems.

The fieldwork findings included evidence of life story work being managed

well but only by therapists, without help the care homes struggled to get

information from relatives and find ways to use the material. The literature

showed little about the challenges of integrating this approach into care

homes, or methods to facilitate life story work. McKeown, Clarke & Repper,

(2006, p.246) call for further research in this area with assessments of the

various ways to “…capture a person’s life story…” and refer to difficulties with

obtaining and sharing information. A therapist interviewed spoke about how

efforts to find out about people’s past occupations and interests should not

override observing and listening to where they are now in the moment.

The findings add some insight to the literature in detailing specific problems

associated with getting to know the background stories of residents.

Interviews with care managers showed that they ask for biographical

information about residents on arrival as part of the admission assessment as

this was seen as necessary for the development of an individualised social

care plan. However in practice, the focus on the clinical needs of a resident

left little time for details about their former life. Relatives were often slow to

respond to requests for background information on residents as some found


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the process difficult, sometimes no information is collected at all about a

resident’s life history. Healthcare staff talked about learning from residents

themselves a little about their former lives.

The inaccessibility of information on residents in the care homes I visited

could be viewed as a major barrier to the introduction of narrative arts

interventions, yet they had both provided creative activities responding to the

individuality of residents. NICE & SCIE (2006) stress the importance of

recognising people’s cultural identity in care homes. This was seen in the

findings, with one resident’s memory of working in the cotton mills and

another recollecting wartime Germany. Having the opportunity to relate these

stories prompted a sense of self-worth and identity.

Hayes (2011, p.93) refers to stories as “…the inner text of our lives” and

believes retelling these is important for emotional expression and wellbeing,

citing different ways people’s stories are told, through visual arts, dance,

drama or writing poetry. This highlights the need for care staff to also

participate in such interventions, not only to learn more about residents but

also to provide ongoing emotional support as memories are recalled.

Hagens, Beaman & Ryan (2003) show how staff attitudes towards residents

improve if they are better informed about residents’ lives, eliciting a better

understanding of their behaviour.

The key to the success of narrative arts, as an intervention that can contribute


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to the recognition of people’s individuality, appears to be in the approach of

the arts practitioners who focus directly on each person with dementia. The

research findings show the importance of listening to people’s expressions,

by recalling exactly what is said and incorporating these words within an arts

activity validates the person as an individual. The literature shows similar

examples, Gibson (2011) refers to creative reminiscence activities as

reinforcing “…a sense of uniqueness, of personal identity and self-worth”.

The impact of narrative arts interventions on care practice was more difficult

to define in this study. The literature provides many examples of the arts

generally supporting the wellbeing of people with dementia (Sacks, 2009;

Siller, 2009) but there were few direct references to care practice apart from

singing (Chatterton, 2011; Hammar, Gotell & Engstrom, 2011). The findings

also showed evidence of people singing favourite songs during care, such as

while dressing a resident to affect their mood and create a calm atmosphere.

Other people described putting on specific music, to soothe a resident.

There was evidence in the literature of narrative arts interventions, such as

memory boxes and poetry, being used to promote communication and the

research findings revealed similar activities having a positive impact on care

practice. Interviews revealed how care staff changed their opinions of

residents as they learnt more about them, leading to more meaningful

conversations. A therapist spoke about seeing a collage of someone’s life,


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which helped her converse with a resident. Communication and the influence

of this on relationships is the second key topic area found in the research.

COMMUNICATION AND RELATIONSHIPS

Bush (2003) identified the need for a more humanistic approach to dementia

care, where care staff have genuine conversations with residents. The

findings show how a narrative arts intervention often creates a social

encounter where people can get to know each other and is seen as significant

in promoting relationships. Arts practitioners spoke about encouraging care

staff to participate in these activities but more often than not they were too

busy, losing an opportunity to discover more about residents. However, it is

evident in the literature that more healthcare professionals now value such

participation (eds. Innes & Hatfield, 2004; Szczepura, et al., 2008).

Communication and conversation form a central part of all the narrative arts

interventions referred to in the interviews and this was also clear in the

literature, with examples of studies describing the benefits of reminiscence

that can prompt storytelling (Gibson, 2011) and conversation as part of care

(Savundranayagam, et al., 2007). Ryan, et al. (2005) challenge the notion

that people with moderate to severe dementia have lost a part of themselves

when they struggle to communicate, believing that it is up to others to find

ways to enable them to express who they are and how they feel. Narrative

arts interventions referred to in the findings focused specifically on enabling

people to express their feelings, tell their stories and connect with others.


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Epp (2003) cites the significance of relationships to person-centred care,

arguing that it is through these social encounters that Kitwood’s (1997a)

positive interactions (Appendix 6) such as validation, holding and facilitation

can take place. The broader social benefits of working in small groups was

shown in the literature, with Phillips, Reid-Arndt & Pak (2010, p.9) citing how

a TimeSlipsTM (2005) activity stimulated positive interactions in particular

“…creation, celebration and play”. The fieldwork findings add to this, with

interviewees referring to laughter being a significant part of many narrative

arts interventions and people showing pleasure sharing the experience of

group activities, celebrating seasonal events together and forming

relationships. Jonas-Simpson & Mitchell (2005) found evidence that QoL

improved through such relationships and emotional expression also

contributed to QoL (Phillips, Reid-Arndt & Pak, 2010).

The fieldwork indicates that narrative arts interventions provide a means for

both verbal and non-verbal communication, by creating opportunities for

people to express their feelings, preferences and individuality. Arts

practitioners referred to people revisiting difficult memories and finding ways

to express how they felt. They spoke about needing different approaches for

different people, using particular techniques such as reflecting words back,

not asking direct questions, using sensory stimuli, objects to handle, working

one to one and in groups. The research findings here provide practical

guidelines for good communication and address some difficult issues that add

further insights to existing literature.


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Several interviewees spoke about the clinical aspects of dementia that result

in a person struggling to cope with social interactions. The literature shows

an increasing interest in sourcing non-pharmacological alternatives for

managing these issues (Douglas, James & Ballard, 2004). A communication

difficulty, in people with dementia, is seen as the prime cause for anxiety and

aggression (Cohen-Mansfield, 2001).

The findings show how this can be perceived as a wish for isolation: “…they

can’t tolerate talking, they can’t tolerate noise, they can’t tolerate somebody

sitting close to them” (Interview-4). The impression is of someone seeming to

be over-whelmed by their environment and the social contact. However, it is

clear in the literature that when a person with dementia responds to a social

interaction by rejecting it, the reason is more likely that they do not

understand what is being said rather than wishing to be left alone (Cohen-

Mansfield, Libin & Marx, 2007). There are many examples in the literature

citing the benefits of social contact in addressing symptoms of emotional

distress (Jonas-Simpson & Mitchell, 2005). Kitwood (1997a) describes how

positive interactions within relationships can support psychological needs and

allow people with dementia to feel nurtured.

The findings show the difficulties of engaging people with late stage dementia

in the arts, communication problems were mentioned by several interviewees

as possible reasons for people’s lack of participation in activities, but there is

little reference in the literature to how the issue is managed. This may


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indicate that the positive results regarding social interventions could conceal

less favourable responses from people unable to participate.

Kolanowski & Buettner (2008) found that recognition of personality types

helps care staff to source interventions that suit particular residents. The

literature shows the value of this not only for people with challenging

behaviour but also for those who are passive and less inclined to participate.

They describe how care staff can tend to focus on residents with aggressive

or agitated behaviours giving less attention to people who are passive, putting

them at risk of further decline.

With concerns shown in the literature regarding unrecognised depression in

people with dementia, the issue is important (Dening & Milne, 2009). The

findings support the literature with several interviewees referring to people’s

personalities and their willingness to participate in groups. There is evidence

that some narrative arts interventions may be used to engage with more

passive residents and also provide a means to express personality.

Kolanowski & Buettner (2008) call for further research in this area, citing the

need for interventions suitable for people who are often excluded due to their

passive behaviour. Jarrott, Gozali & Gigliotti (2008) refer to the benefits of a

structured Montessori approach for group work with people with dementia,

which recognises the benefits of passive engagement in activities for some

care home residents.


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Interviewees spoke about the ingenuity of arts practitioners to find ways to

engage with people individually, adapting activities in response to people’s

needs, showing how narrative arts interventions can contribute to improving

this aspect of care practice. The particular benefits that come with arts

practitioners visiting the care home was often referred to in the findings.

Indeed the playful aspect of many narrative arts interventions naturally

provided opportunities to laugh, allowing participants to relax and feel a part

of something happening in their community. It was felt that their innovative

methods of encouraging social interactions with participants helped to

stimulate conversations and contributed to informing care staff of the

residents’ abilities and personalities.

The findings generally support existing literature, with further evidence of the

intrinsic value of participation in creativity to communicate personal stories

that often convey emotional substance. The findings showed several

examples of the beneficial effects of group work, seen to stimulate memories,

provide opportunities for conversation, relationships and allow people to feel

part of a wider community. These issues all support the literature (Abraham,

2005; Aked, 2008).

The most valuable interventions talked about in the interviews referred to

group work, bringing opportunities for people to build relationships in their

daily life and feel part of the care home community. Jonas-Simpson &

Mitchell (2005 p.52-53) asked care home residents what was important to


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their QoL and relationships were listed along with “… persisting with life

patterns…”. Having weekly programmes of familiar activities was seen as

beneficial in providing a sense of family, of routine, being part of a community

within the care home, where there was shared enjoyment of significant events

throughout the calendar year. Interviewees felt that this was a useful way to

bring the residents, families and staff together and connect them with the

wider community.

Group activities are seen as being particularly beneficial in providing

opportunities for sharing experiences, which help validate how people feel.

Beard (2012, p.641) talks about the benefits of storytelling, citing TimeSlipsTM

(2005) (Figure 4), which “…generates fictional stories based on group stream

of consciousness rather than relying on direct recall”. This is seen as

effective as it is clear there is no right or wrong response to the unusual

images. The process of storytelling can help people articulate their feelings:

“Employing visual, tactile, olfactory and audio stimulation, dementia

sufferers…find “voice” for their feelings” (Bober, et al., 2002, p.73).

This is pertinent to my first research question as the shared storytelling

approach clearly contributes to recognising the individuality of people with

dementia. The significance of sensory stimulation leads me on to the third

topic area of particular interest seen in the findings, which is relevant to my

second research question looking at the impact of narrative arts interventions

on care practice.


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Photo credit: TimeSlips

Figure 4 TimeSlipsTM (2005) photo for storytelling (with permission)

MULTISENSORY APPROACH

The literature shows that there is a growing interest in multisensory

interventions for people with dementia, although the implications for general

care practice are not clear. Baker et al. (2003) show benefits in behaviour of

people with dementia participating in a Snoezelen® (Rompa, 2012)

intervention. However, the positive effect did not extend beyond the duration

of each sensory session or impact on care practice. While van Weert, et al.

(2005) demonstrated the wider impact on behaviour by incorporating


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personally tailored sensory input as part of 24 hour care practice, although

the authors of this study acknowledge limitations in the methodology and

findings. The positive outcomes indicated that care approaches in EMI

homes, which incorporate sensory features, would reach more residents than

care that ignores this aspect. Douglas, James & Ballard (2004) confirm this,

citing aromatherapy as a particularly useful approach in managing

restlessness and agitation in dementia care.

My research findings also show positive results from interventions that include

sensory components such as items to smell, familiar music, tactile objects to

handle. Even taste is brought into the SonusTMapc (2011) intervention. The

interviewees who facilitate this activity spoke about the benefits of this

approach for communication and one to one work but also reported that

“…it’s not everyone’s cup of tea!” (Interview-5). The structured session that

requires participants to sit together in a circle does exclude people unable or

unwilling to cooperate.

My other research findings, from arts practitioners and a care manager,

demonstrate examples of narrative arts interventions incorporating sensory

stimuli as a means to make activities more accessible for people who would

not otherwise participate. This might be due to their advanced stage of

dementia, communication problems, or a sensory deficit such as being hard

of hearing or visually impaired. Interviewees spoke about the beneficial

aspects of sensory stimulation, such as object handling and pet therapy,


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encouraging personal storytelling and having a positive impact on mood.

These findings support the literature, UCL (2012) and Davenport (2010) refer

to positive social interactions and memory recall from handling objects. While

Twigg (2010) describes the significance of touch with regard to clothing,

affecting mood and a sense of identity in dementia care. The Storybox

Theatre project in Manchester uses a sensory approach in all their

interventions, with props and costumes for role playing:

…the emphasis is moved away from spoken language and participants are able to communicate and interact with the activity in their own way…everyone dresses up using hats and scarves and other props and this tends to encourage laughter within the group. Participants sift through the different objects and develop a character through this exercise (Harries, 2013, p.16).

These kind of activities, providing opportunities for play and creativity, align

with Kitwood’s (1997a) positive interactions (Appendix 6) regarded as

necessary for person-centred care and a good QoL. The social and inclusive

features of this approach allow all participants to contribute and share the

enjoyment, gaining a sense of community and relationship. An interesting

addition though is how these creative interventions can be brought directly

into care practice, addressing some of the more challenging aspects of care

practice such as washing and dressing. Care staff with additional skills

gained from participating in creative interventions, like the Storybox Theatre

Project, can incorporate some of these sensory ideas into care practice to

help change people’s mood and acceptance of support when needed.

The research findings indicate that narrative arts interventions contribute to a


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better understanding not only of the individuality of residents but also their

sensory preferences. In this way care staff are better able to assess people’s

responses to sensory stimulation and then use that knowledge in their care

practice. One interviewee talked about how observing new residents’

participation in creative activities help care staff assess their needs and

abilities, which contributes to personalising care plans and making their care

practice more person-centred. This supports the literature showing how

recognising the individuality of people can make care practice more person-

centred and contribute to a better QoL with “…decreased agitation

…improved sleep patterns…maintenance of self-esteem…” (Epp, 2003). The

findings also respond to McKeown, Clarke & Repper’s (2006) call for

evidence showing effective methods used to represent people’s lives and the

impact on care practice.

The research has shown several ways in which narrative arts interventions

might influence care practice but the three topic areas outlined above are

seen as most likely to have a positive impact on quality of life for residents

with dementia. In the next and final chapter I will summarise the different

stages undertaken to complete this study and conclude with implications for

practice, recommendations for further research and a reflection on the

research process.


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CHAPTER 6 - CONCLUSION

The aim of this research has been to explore how participatory arts

interventions contribute to dementia care and QoL in residential settings. The

literature review and research findings outlined specific problems in dementia

care but also included some examples of positive care practice influenced by

a narrative arts approach. Using qualitative research the study found various

challenges and barriers to the acceptance of these new processes but also

revealed three significant aspects of dementia care where narrative arts

interventions could contribute to care practice. These were in addressing

issues of: personal identity and individuality; communication and

relationships; and utilising a multi-sensory approach.

IMPACT ON CARE PRACTICE

It was evident from the findings that recognition of personal identity and

individuality cannot rely on life story work. Although this is seen as a useful

method for care staff to learn more about people’s lives it is often difficult for

care homes to obtain biographical information on residents and find ways to

incorporate this into care practice. It was rewarding therefore to see many

other approaches where a person’s individuality can be acknowledged and

celebrated.

Narrative arts interventions were seen to contribute to care practice by

providing creative methods for people’s stories to be discovered and shared.


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Care staff participating in these social encounters benefit by learning more

about residents and seeing their individuality honoured. Arts practitioners

often find unusual ways to make social connections with people with

dementia and there is evidence that these interventions contribute to

promoting: good communication; storytelling; relationships; recognition of

personalities and identity; autonomy; needs assessment and also; a sense of

wellbeing and belonging for residents, where they can feel nurtured and part

of a wider community.

Communication is seen as fundamental to narrative arts interventions, which

focus on enabling people to interact and participate. The study showed

evidence of care staff discovering activities can support their conversations

with residents, helping to build relationships also recognised as important for

QoL. The narrative arts interventions provided opportunities for social

interactions both one to one and in groups allowing residents to feel part of a

wider community.

The multisensory aspect of many narrative arts interventions was seen to

make them more accessible to people who may not otherwise participate.

The study showed how sensory interventions can affect people’s mood, be

comforting for some people, or contribute to stimulating memories and prompt

storytelling for others. Care staff with knowledge about individual residents’

sensory preferences were better equipped to respond appropriately and

utilise these aspects during daily care practice. The tactile aspect of some


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narrative arts interventions, such as manipulation of materials or object

handling as in reminiscence activities, was reported to be also beneficial for

emotional expression. The study showed how memory boxes, including

sensory items, contributed to making personal care interventions more

manageable for residents who exhibit aggressive or agitated behaviours. In

this way, narrative arts interventions provide opportunities for bringing a

multisensory approach into general care practice. However, the research

indicates that this aspect of narrative arts needs to be explored further.

STRENGTHS AND LIMITATIONS OF THE STUDY

Reflecting on the research undertaken I feel honoured to have had the

opportunity to explore this area of work and appreciative of the important

contributions from people I interviewed. Lessons learned from the research

include taking time to be with people living with dementia in their world,

allowing them to direct the journey of an arts intervention and clearly

responding to their contributions.

It was apparent from the literature that the perspectives of care home

residents and their relatives are not often included in dementia research. The

study results are strengthened by the detailed fieldwork data representing a

range of different viewpoints on dementia care. Some of the most surprising

insights came from the residents’ perspectives.


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The research findings are limited due to the limited number of people who

could be interviewed in the available time. It would have been useful to have

increased the sample size and incorporated some quantitative data together

with further qualitative material. This would increase the validity of the

findings, by showing measurable benefits of particular care interventions and

potentially enrich the data. In retrospect I would like to have included an

observation component to the methodology, as there were several

opportunities where I could have captured more detailed data on specific

narrative arts interventions.

IMPLICATIONS FOR POLICY AND PRACTICE

Personally I have gained some valuable knowledge about participatory arts in

dementia care throughout this study that will benefit my own arts practice. In

developing my research skills I feel better equipped to explore further fields of

interest relating to dementia care. The study showed the benefits of

incorporating sensory components within arts interventions making these

activities accessible to more people, which may be of interest to other arts

practitioners working in this field. Perhaps with funding to support narrative

arts interventions in care homes and provide further training for care staff,

less would need to be spent on pharmacological treatments in dementia care.

The knowledge that residents with passive behaviours can receive less

attention in care homes, putting them at risk of depression and further

decline, indicates the significance of recognising individual personalities and


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making activities accessible to all. As more health professionals discover the

skills that arts practitioners have in working with people living with dementia,

there will be more opportunities to work in partnership developing shared

approaches to good practice.

RECOMMENDATIONS FOR FUTURE RESEARCH

The study indicates that more needs to be understood about ways in which

dementia care practice can embrace narrative arts, addressing the challenges

and barriers evidenced in this research. This might include training for care

staff that includes partnership work with arts practitioners discovering more

about narrative arts, the benefits of sensory stimuli and object handling.

Further research is needed to fully understand the implications of this

approach on care practice and residents QoL. Yet the outcomes of this study

indicate that narrative arts interventions have sufficient value to be further

explored in dementia care.


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APPENDIX 1 - ACRONYMS

BPSD Behavioural and psychological symptoms of dementia

CQC Care Quality Commission

EMI Elderly Mentally Infirm

NICE National Institute for Health and Clinical Excellence

ONS Office for National Statistics

QoL Quality of life

SD Secondary data

SCIE Social Care Institute for Excellence

UCL University College London


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APPENDIX 2 - ETHICAL APPROVAL

Email confirming ethical approval

Application for ethical approval

Letter of introduction re. interviews

General information and consent form

Information and consent form for residents

Completed risk assessment


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APPENDIX 3 - SECONDARY RESEARCH

The Health and Social Care Act 2008 – Regulations 9 & 17

Care Quality Commission Key Inspections outline regarding

Standard 12 – Social Contact and Activities

Thematic analysis of secondary research data


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APPENDIX 4 – SEMI-STRUCTURED INTERVIEWS

Focus of data collection

Sample interview questions:

- Arts practitioner

- Relative of care home resident

- Care home manager


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APPENDIX 5 - ANALYSIS OF FIELDWORK

List of semi-structured interviews conducted

Example sheet showing initial thematic analysis


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APPENDIX 6 - KITWOOD’S CARE INTERACTIONS

Tom Kitwood and Personhood:

Definition with positive and negative care interactions


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APPENDIX 7 - LIFE STORY MAP AND NARRATIVE ARTS IMAGES

Life story guidance – Dementia UK

Example life story map – key facts

Examples of narrative arts collages

Example of Age Exchange diorama life story

An evaluation of the impact of narrative arts interventions on care practice in residential care...

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