The Transition to Caregiving:The Experience

of Family Members Embarkingon the Dementia Caregiving Career

Kathryn Betts Adams, MSW, PhD

ABSTRACT. Although there is an extensive literature on dementiacaregiving, research on family members’ adjustment to the onset of de-mentia and on the early stage of caregiving is limited. This article de-scribes a phenomenological study based on twenty semi-structuredinterviews with spouses and adult daughters of someone with early/mild dementia or mild cognitive impairment (MCI). Participants wereasked to describe the earliest changes in the parent or spouse and thechanges to their everyday lives and in their relationships brought bycognitive impairment. These family members reported taking on manynew responsibilities in a highly interactive caregiving process consist-ing primarily of decision-making and supervision. Many participantsreported experiencing frustration, resentment, grief, and relational de-privation, along with increased protectiveness and tenderness towardsthe person with dementia. Most of the participants were ambivalentabout seeking or accepting help from others and seemed to want to

Kathryn Betts Adams is affiliated with the Mandel School of Applied Social Sciences andUniversity Memory and Aging Center, Case Western Reserve University, Cleveland, OH.

Address correspondence to: Kathryn Betts Adams, MSW, PhD, c/o MSASS, CaseWestern Reserve University, 10900 Euclid Avenue, Cleveland, OH 44106 (E-mail:kba5@case.edu).

The author would like to thank the following colleagues for their help with the studyand/or the manuscript: Tonya Cardwell, Karl Herrup, Marcie Lambrix, MelissaOlenik, Sara Sanders, and Kathleen Smyth.

Funded by National Institute on Aging #P50-AG 08012.

Journal of Gerontological Social Work, Vol. 47(3/4) 2006Available online at http://jgsw.haworthpress.com

© 2006 by The Haworth Press, Inc. All rights reserved.doi:10.1300/J083v47n03_02 3

maintain the status quo as long as possible. Social workers meetingwith families in the context of disclosure of a dementia diagnosis or theearly adjustment period may help by identifying their losses, normaliz-ing negative feelings, and helping families envision ways they coulduse outside help. doi:10.1300/J083v47n03_02 [Article copies available for afee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mailaddress: <docdelivery@haworthpress.com> Website: <http://www.HaworthPress.com> © 2006 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Caregiving, early-stage dementia, MCI, Alzheimer’sdisease, phenomenology, attitudes towards services

Recent advances in available medications for early and moderateAlzheimer’s disease or other progressive dementias (ADOD) havemeant a concomitant emphasis on early detection, diagnosis and treat-ment for persons with symptoms of cognitive impairment (Dorai-swamy, 2003). Diagnoses of possible or probable Alzheimer’s disease,vascular dementias, and other progressive dementias are now joined bythe newer diagnosis of Mild Cognitive Impairment (MCI). MCI is aterm that first appeared in 1990 and generally refers to evidence of cog-nitive impairment not meeting criteria for dementia (Bennett, 2004).Although MCI is considered a major risk factor for progression toADOD, the rates of conversion have varied widely in different studiesand people with MCI are often being prescribed medications for theircondition (Davis & Rockwood, 2004). This period requires the personwith ADOD or MCI and his/her family to make many adjustments toactual and anticipated losses, and to acknowledge and adapt to changesthat may have been unacknowledged before the diagnosis. This earlystage of cognitive impairment represents a period of transition for theclose family member and the person with dementia into becoming care-giver and care recipient.

To date, researchers and those working with families in clinical andcommunity settings have not fully explored the psychosocial effects ofthe diagnosis and the new caregiver role, and how this role is experi-enced within available social and service contexts. In a recent review offamily dementia caregiving, Schulz and Martire (2004) advocated moreresearch on the early stages of dementia caregiving in order to identifycharacteristics of family members who may be more prone to problems

4 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

and may benefit from early intervention: “We know relatively littleabout transitions into and out of the caregiving role. Understanding pre-or early caregiving stages may enable us to develop preventive inter-vention strategies that protect the caregiver from adverse outcomeslater” (p. 247). The current study is based upon the analysis of qualita-tive data about the experiences of close family members of persons withMCI or early ADOD. Among the research questions fueling this studywere: What are the major concerns of spouses and adult children of per-sons recently diagnosed with Alzheimer’s disease or MCI? What isearly caregiving like for them? What is the range of emotions they expe-rience? How do they feel about informal or formal sources of help? Canwe identify target areas for social work prevention and intervention?

LITERATURE REVIEW

Although there is an extensive literature on dementia caregiving, re-search on family members’ adjustment to the onset of dementia and onthe early stage of caregiving is limited. Pearlin and Aneshensel (1994)were the first to write about the changing nature of the “caregiving ca-reer” over time. Often there is no discrete event to denote the beginningof dementia caregiving, though its onset has been defined by the begin-ning of assistance with at least one activity of daily living (Gaugler,Zarit, & Pearlin, 2003). One line of inquiry has sought to identify theearliest problematic issues involved in assisting a family member withearly stage AD. For example, in a small qualitative study, husbands car-ing for wives reportedly first noticed personality changes rather thanmemory changes prior to the diagnosis of dementia (Samuelsson,Annerstedt, Elmstahl, Samuelsson, & Grafstroem, 2001), and all of thesubjects reported heavy burden in the early stages of the illness. In an-other recent study, apathy and withdrawal from social and leisure activ-ities were found to be the most frequent among the early changesreported by caregivers, indicating that functional decline is perhapsmore noticeable to the family than cognitive decline (Derouesne,Thibault, Loseron et al., 2002). Furthermore, Braekhus, Oksesngard,and colleagues (1998) found this curtailment of social and leisure activ-ities to be an independent predictor of caregiver strain.

Other studies have focused on the grief inherent in a diagnosis ofADOD (Blieszner & Shifflett, 1990; Dempsey & Baago, 1998). Garner(1997) has compared the situation in AD to anticipatory grief in termi-nal illnesses such as cancer, noting that the loss of intimacy and mutual-

Kathryn Betts Adams 5

ity among married couples where one has progressive dementia is like adeath before death. Several studies (Adams & Sanders, 2004; Meuser &Marwit, 2001, 2002; Ponder & Pomeroy, 1996) have reported that care-givers’ subjective grief was initially high following the diagnosis,tended to decline during the middle stages of caregiving, and then to in-crease later at the terminal stage of the illness. Caregivers’ level of griefhas been shown to be related to their depressive symptoms (Sander &Adams, (Nov. 2005).

Many clinicians have found anecdotally that families may deny thecognitive impairment and delay help-seeking, often until some kind ofperceived crisis forces action. One study found that family caregiversbringing someone to a memory disorders clinic had delayed seeking thishelp for an average of nearly two years after first becoming aware ofsymptoms in their loved ones (Wackerbarth & Johnson, 2002). Even af-ter seeking help, however, another study found caregivers’ needs forservices and information in the first two or three visits to a clinic re-volved around practical and concrete issues and that most caregivers didnot display an interest in finding emotional or psychosocial support forthemselves until at least the third visit (Wald, Fahy, Walker, & Living-ston, 2003).

Clare (2002) has proposed a model of how married couples cope inreaction to the diagnosis and early symptoms of ADOD. She has identi-fied four specific responses which she has named holding on, compen-sating, fighting, and coming to terms (Clare, 2002). The first, holdingon, is akin to denial or hoping for something miraculous to occur. Thelast, coming to terms, is seen as acceptance of the reality of the chronicand progressive nature of the dementia. The two intervening coping re-sponses, compensating and fighting, appear to be interrelated as bothencompass strategies for managing in the face of memory loss and othercognitive changes, increasing reliance on others, focusing on remainingabilities, and talking about concerns.

Finally, there are a few examples of prospective longitudinal studiesfollowing non-caregivers over time until some become caregivers. Inone study, Kramer and Lambert (1999) studied the transition into beinga caregiver among husbands, noting that new role acquisitions (e.g., in-creased household tasks) and troubled marital relationships were moreprevalent among new caregiver husbands than non-caregiving hus-bands. Seltzer and Li (2000) examined the onset of caregiving fordaughters versus wives of frail elders and found that wives experiencedmore ill effects from the entry into caregiving than daughters. The workof Wuest, Ericson, and Stern (1994) has focused on the “reciprocal pro-

6 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

cess of becoming strangers” during AD, and the caregiver’s struggle tomaintain commitment to someone who resembles his or her familymember less and less as the illness progresses. The available literaturesuggests that the onset of ADOD brings about new roles for spouses orother close family members, and may be characterized by anticipatorygrief and a variety of coping responses. In addition, this literature sug-gests that families delay seeking a diagnosis, and then delay seekinghelp in caring for the person with dementia. But we have not heard thefamily member’s perspective on this transition from mutual, reciprocalrelationship to that of caregiver and care recipient, their subjective ex-perience of early caregiving for someone with MCI or ADOD, theirneeds, and their concerns. This study gives voice to these family mem-bers.

METHOD

In order to gain an in-depth understanding of early or prospectivecaregivers’ subjective experiences with MCI or the early stages ofADOD, a qualitative study using methodology from phenomenology(Moustakas, 1994) and grounded theory (Strauss & Corbin, 1990) ap-proaches was planned. In the phenomenological approach, the re-searcher seeks to illuminate essential lived experience about a topic byexamining people’s subjective understanding and interpretation of theworld often through in-depth interviews (Patton, 2002). In this study,data collection consisted of audiotaped in-person interviews and the in-terviewer’s notes about each interview. From the literature on caregiv-ing, from the author’s personal and clinical experience with mildlyimpaired older adults and prior research on caregivers’ grief and depres-sion, a list of open-ended questions for the interviews was generated.The questions focused on the story of the early cognitive changes in thefamily or couple, how the participant viewed their relationship with theperson with cognitive impairment within this transitional process, theirunderstanding of the caregiver role, effects upon them as they adopt thatrole, and any concerns they may have about the present and the future.The list was not adhered to rigidly, but served as a guide for the inter-viewer to uncover participants’ stories and the meanings and motiva-tions behind those stories. Using methodology from grounded theory,questions were added or altered iteratively based on emerging themesfrom the current and prior interviews, and data collection and data anal-ysis were overlapping and interdependent parts of the research process.

Kathryn Betts Adams 7

Participants were recruited from research partners (usually a closefamily member) of persons diagnosed with a form of dementia such asfrontal lobe dementia, or possible or probable Alzheimer’s disease, orwith Mild Cognitive Impairment (MCI). These persons with dementiaor MCI and their research partners had already joined the research regis-try of the University Memory and Aging Center, Cleveland’s Alzhei-mer’s Disease Research Center (ADRC), which recruits from the widercommunity in a number of ways. During the entry visit, the researchpartner is asked to participate in the research of the Center. A letter de-scribing this study was sent to research partners of persons with MCI ormild dementia who had agreed to participate in caregiving research.These persons were identified by a Clinical Dementia Rating (CDR;Hughes, Berg, Danziger, Coben, & Martin, 1982) score of .5, indicatinguncertain diagnosis or MCI, or 1, indicating a rating of “mild demen-tia.” The CDR is a screening scale that takes into account memory, ori-entation, judgment, and problem-solving, participation in communityand home activities, and ability to perform personal care. Several dayslater, the potential subjects were contacted by phone and given a brieftelephone screen to determine interest and eligibility, and to schedulethe interview. A total of twenty spouses and adult children of personswith mild dementia or MCI were interviewed within the first year aftertheir entry into the research registry. Approximately one-hour semi-structured individual interviews consisting of open-ended questionswere tape recorded and transcribed for analysis. Eighteen of the inter-views occurred in one of the offices of the University Memory and Ag-ing Center, one occurred in a subject’s home, and one occurred in arestaurant.

Transcripts of the interviews and the researcher’s written reflectionsand observations about each case were analyzed and compared to iden-tify significant and recurrent themes and to draw tentative conclusionsabout possible relationships between characteristics of the individualsand their responses. Coding proceeded in two stages. First, line-by-linecoding of all of the text was done to identify and group all material intobroad topics of interest, e.g., early symptoms, emotional reactions, is-sues with family and friends, coping strategies, and so forth. Second,more interpretive coding was done to identify new conceptual catego-ries that had emerged during the interviews, and to tease out recurrentsub-themes within the larger topical themes. Two persons, the authorand a student research assistant, coded each transcribed interview andidentified themes, using N-VIVO software. The two coders were notblind to one another’s coding, thus formal inter-rater reliability could

8 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

not be calculated. Rather, the research assistant’s codes were integratedinto the author’s coding and differences were resolved by the author.

FINDINGS

Demographic information for the 20 participants is shown in Table 1.Participants were equally divided between men and women, but amongthe men, all were spouses, whereas four of the women were adultdaughters. With one exception, the experiences of partners of personswith MCI did not differ appreciably from those with mild dementia, orby the specific dementia diagnoses. One of the participants reported thathis wife was very mildly impaired with MCI and in fact there was somedoubt about her diagnosis, so that his story was quite a bit less dramaticand involved than the others. As the starting point for each interview,participants were asked to tell the story of how they first noticed symp-

Kathryn Betts Adams 9

TABLE 1. Description of Study Participants

Description of Interview Study Participants (Early-Stage Caregivers)

Participant relationship to care recipients Ages Mean (SD) Range

Husband: 10 Participants: 68 (12) 45-82

Wife: 6 CareRecipients: 74 (10) 56-87

Daughter: 4

Participant Race Participant Sex

Black: 2 Male 10

White: 18 Female 10

Diagnosis of person with memory loss Time since onset of memory loss

Mild CognitiveImpairment:

3 Mean (SD)

Possible AD: 9 3.8 years (1.7)

Probable AD: 4

Frontal Lobe: 2

Vascular Dementia: 2

Mini Mental Status Exam Score (MMSE) Clinical Dementia Rating Scale (CDR)

Range: 13-29 0.5 “uncertain” or MCI 10

Mean: 23.75 (4.3) 1 “mild dementia” 10

toms and came to seek help. Although family members were selectedfor this study who had come into the research registry of the ADRCwithin the past 12 months, a number of these families had known aboutthe memory loss, and in some cases, had a diagnosis of probable AD orother dementia, for 2 or more years (see this information in Table 1).Retrospective questioning was done to recall how the early stages un-folded and what led the family to seek medical evaluation. In terms ofearliest changes noticed in the person with cognitive impairment, re-spondents noted signs of apathy, or short-term memory loss, usuallymanifested by obvious forgetting, or repeated questioning, about equally.Several of the family members mentioned that they ignored signs toolong, or expressed some guilt that they hadn’t done something soonerand many of the spouses or daughters recalled a single traumatic eventthat had tipped the balance and gotten them to seek help.

After a crisis had occurred, or at least the problem was out in theopen, these families had gone for help and either the suspicion or theconfirmation of a diagnosis was obtained through medical evaluation.Several study participants spoke of how upsetting the realization was.One husband, Mr. J., said, “The early stage, early on it shocked . . . thefact that such a sharp mind was starting to slip . . . she was my stabi-lizer.” Mrs. S., a woman in her 80s, also remarked on how her husbandhad been “a brilliant mind,” which seemed to make the news of demen-tia harder to understand and accept. Another husband, Mr. R., said, “Itdawned on me, I couldn’t rely on her, she’s not all there,” while anotherof the husbands said, “It hit me hard.” Mrs. F., a wife in her late 40swhose husband has early-onset AD, was particularly upset by the diag-nosis. She recalled feeling “past overwhelmed” and even consideringdivorce. “I just broke down and just cried and cried like real hard. I’mlike, what am I going to do?”

The interviews subsequently generated a number of conceptualthemes and sub-themes. This article describes the additional themes asfollows: Family member tasks (instrumental tasks, decision-making,interactive nature, emotional cheerleader); Changes in the relationship(protectiveness and concern, loss of confidant); Negative emotions;Support from others (informal and formal) and Thoughts of the future.

New Family Member Tasks

Several different categories of new tasks that had befallen these fam-ily members came to light during the interviews. First and quite obvi-ously, many had taken over instrumental tasks the impaired person

10 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

formerly did, such as cooking, housework, errands, balancing thecheckbook, and driving. For many of the husbands, the need to be in-volved with cooking, laundry, and other housework was relatively new.Mr. D., in his late 70s, reported he hates to cook, yet he found himselfresponsible for all of the meals now. Mrs. S., one of the wives, reportedshe never handled the finances before, and she remarked with some bit-terness that in her 80s she’s had to learn how to do that: “All 50-60 yearswe have been married, he has done all of the financial stuff. Paying thebills, all of the investments and all that stuff. I’m terrible with that stuffanyway, so it was all right with me. Which was stupid, they always tellyou now to do these things, so now I have to learn how to do all thesethings.” Many of the spouses reported handling more of the social cal-endar, keeping in touch with grown children, and other “soft” tasks thatthey now must do. Mr. J. said it this way: “She’s assigned me the choreof being her memory.”

For the husbands and wives dealing with the changes, the responsi-bilities for the household fall squarely on their shoulders. This seemedparticularly hard on the oldest spouses. The wife who complained abouthaving to learn about finances, Mrs. S., a woman in her 80s, stated, “Ican’t really ask him to go and take care of things. It is your responsibil-ity and you have to do it.” Mr. G., an older husband, noted that his wifedealt with most of the domestic decisions until recently. When askedabout effects on him, he said, “I would say it has had an effect that I’vehad to be out in the front more as head of the household, really beinghead of the household.” Mr. P., another older husband said, “This hasbeen a maturing experience.”

An important subtext of the discussions about taking over tasks wasapparent in most of the interviews: the struggle to decide how much todo for the person with memory loss, when to take over, how much topush, how much to limit. These decisions are being made on all levels ofdaily life, and need constant reconsideration, as the condition of the per-son changes. Ms. P. described how this was evolving with her mother,“Her job is to do dishes, because she has arthritis in her hands. I have togive her different cues and guidance on the dishes, which is bad. Wecook together now instead of her cooking herself, because she is forget-ting how to cook.” Similarly, Mr. G reported, “I have to tell her what todo. I guess that means not just the big things, but the little things. Like,‘Should I clean the house today?’ ‘Yes, why don’t you clean the housetoday?’” Another husband, Mr. B., also reported that his wife requiredhis help with her domestic chores: “Now, we just did a little wash thismorning and we both went downstairs together and just kind of went

Kathryn Betts Adams 11

through this together to just kind of keep in touch with what’s going onand that type of thing. And I don’t know if she’s ever really going to doall of that herself again. She may.” Areas in which they hadn’t needed tobe involved may suddenly become areas needing their supervision. Thenumber of personal interactions has increased for these couples, as dailyroutines have become linked. The need to oversee and participate intasks with the impaired person has led several of these family membersto create systems and strategies for getting their loved one to cooperatewith dressing, showering, and household chores. As Mr. B. said sadly,“I even have to make her take a shower. For a while there I wasn’t doingthat, but I thought, that’s not right, she goes for days without a shower.What she tries to do is sneak and get dressed while I make her breakfast.But I make her go and get undressed and take a shower.”

Decisions around safety were mentioned frequently. Driving was anobvious source of concern. Some families simply took the keys away,but other families faced with mild dementia or MCI compromised by al-lowing the person to drive to familiar, nearby locations. Mrs. M. said, “Ido try to go with him if there’s a strange place we are going, but he doesdrive to the bank by himself and to the grocery store, the places we havealways gone.” Mr. J. reported, “It was natural people asked, ‘Does shedrive?’ Fearing the worst. And I want to be prepared for the worst, so formost of our driving, I do it.” Daughter Ms. W. described another com-mon dilemma and the calculated risks she takes: “I’m seeing that I haveto give more and more care. She is still capable of doing a lot of things,but . . . my biggest fear is that if she turns the burner on, she turns it ontoo high and there might be a fire.” Despite this concern, Ms. W’smother was still being left alone to prepare simple meals.

The interactive nature of many of these decisions made them asource of stress for participants, as well. Their loved ones with early-stage or mild cognitive impairment were often reported to be quiteaware of the situation and to be participants in decisions about daily ac-tivities and care. In many cases, they would not passively accept ar-rangements made for them; decisions needed to be negotiated or,conversely, decisions needed to be made covertly that circumvented thewishes of the care recipient. As Mr. C. said, “You have to be very care-ful, you just agree with them.” Some participants described how theytried to make decisions as a couple or a family regarding the needs of thecare recipient, with varying degrees of success. Sometimes the personwith cognitive impairment was reported to be angry or uncooperative.Mrs. M. noted that her husband “doesn’t like to be nagged or told to dothings . . . sometimes he gets sarcastic.” Mr. L. described a family dis-

12 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

cussion in which his wife “stormed out, because she said we should notbe talking about her behind her back, and we said ‘Now wait, you’rehere, it’s not behind your back.’ ” Mrs. C. has taken over the finances,but admitted, “Oh yeah, he doesn’t want me to, of course. He thinks heshould handle the bills, and I don’t blame him.” Simple daily routinesaround personal grooming, daily tasks, food selections, and the like,sometimes become disputes with the impaired person.

A related role these family members have taken on is that of emo-tional cheerleader or coach for the person with cognitive impairment.They described trying to make things easier on their loved ones,smoothing things over, and being a support rather than just a task mas-ter. Mr. R. talked about the things he tries to get his wife to do, thenadded, “But I keep it real low key.” Mr. B. spoke of how he tried to em-pathize with his wife’s situation in this transitional time when she’saware she’s having difficulties with memory and cognition: “There aretimes when she will get a little teary-eyed and say, ‘Why am I goingthrough all of this, why do I have to be this way?’ So she is kind of deal-ing with these things herself which means I have to be a little more un-dergirding with her, and caring with her, to be able to make all of thiswork pretty well.” This same husband later added, “I’ve tried to under-stand what she is going through here. When she gets up in the morning,what does she think . . . I don’t want to be overly aggressive with her ingetting her to do things.” Mrs. V, one of the wives interviewed, focusedon her efforts to find meaningful things for her husband to do. She re-ported that she had started trying to arrange a paid part-time job, butended up deciding she would settle for something unpaid, saying, “Youknow, it was, ‘What could he do?’ Maybe for two or three times a week,just to get him out. It’s got to be hard to wake up in the morning and youhave nothing to do.”

Changes in the Relationship

Interviewees were asked about any changes in their relationship withthe person with memory loss. The spouses among the participants weredealing with issues of sexuality and intimacy, which sometimes meantthey had more clearly tender and loving feelings towards the cog-nitively impaired person. Many of the husbands and the wives men-tioned that the loving relationships with their spouses were still evidentand hadn’t changed appreciably with the onset of cognitive impairment.Mr. J., in a second marriage, noted that the life he shared with his wifecontinued to be “filled with humor.” As he spoke of how they dealt with

Kathryn Betts Adams 13

the cognitive impairment, he spoke of “we” consistently–even down to,“We’re taking Aricept now.” Another husband, Mr. R., said, “I amthankful I have her and that I can still talk to her. If anything, I am closerto her.” And Mr. G. stated, “The personal feeling between us as far asour marriage and love and so forth, that is still very strong.” In this andsome of the other married couples, the spouses expressed a sense of in-creased protectiveness and concern for the impaired spouse. It seemsthat some of the husbands at least partially welcomed the opportunityfor increased closeness with their wives as they became more involvedin the everyday lives of their wives who have some degree of cognitiveimpairment.

Several of the spouses reported that their husbands or wives neededincreased emotional attention from them, another element of the inter-active nature of early caregiving. Mr. B. noted that he would try to sitdown to the computer for awhile and within moments his wife would bein the den with him complaining that she’s lonely. Mr. R. noted that hiswife was more affectionate and demanding of affection than before:“She’ll say ‘I love you’ and she hugs and kisses me. I’ll say, ‘We justdid this five minutes ago!’” Mr. G. reported a similar experience: “Ohyeah, she constantly tells me that she loves me and she wants me to tellher that I love her, and I do. I give her hugs and kisses and she reallylikes that. It’s the least I can do; she was my wife for 49 years.” Mrs. F.,the young wife with a husband with early onset Alzheimer’s disease,spoke of his continued interest in sexual intimacy as a painful part of thedementia. She did not feel that a sexual relationship was appealingwhen he had become someone who required her help and whose judg-ment was now impaired. As she stated, “[I’m] dealing with him as achanged person, ‘cause that’s not the person I married . . . and he stillwants to have this relationship like we had. [I feel like saying] ‘I’ll takecare of you and I’ll get what you need and all that kind of stuff, but I’mnot wanting to have sex with you.’” In contrast, the wife in an older cou-ple, another second marriage, regretted the lack of sexual intimacy.“You know,” she said, “I still love him very much. I would love to be in-timate with him again.”

The spouses interviewed described other important changes. Al-though affection and physical intimacies usually continued to some de-gree, there was a general sense that spouses were losing or had lostimportant elements to their relationships. Mr. L. was particularly elo-quent when he said, “Well, I guess it’s sort of a disappointment becausewe’ve had such a wonderful relationship and we still have a good rela-tionship but it’s just a little different. There is a tinge of sadness in it that

14 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

is like if you have a week of vacation that is wonderful and when youleave it, you’re sad.”

Loss of someone to confide in or discuss important decisions withwas something several interviewees mentioned. There was a sense thatthe cognitively impaired person needed to be shielded from too muchinformation, and may not have been able to fully participate in a conver-sation about important issues. In some cases, the early recognition thatsomething was wrong was one of the first times the family member hasto bear the burden of important bad news without being able to share itfully. For example, Mr. J. reported feeling that the emotional impact oflearning about his wife’s MCI was something he had to deal with alone;he felt he couldn’t let on to her how upset he was or draw upon her forsupport. This was a new experience in their marriage. As stated by Mr.D: “I don’t discuss things with her much.” In a similar vein, Mr. G said:“I still talk with her, but sometimes I have to leave things out.” Mr. B.described his sense of loss very clearly.

The hardest thing is that I don’t have anyone to talk to anymore. Ican’t discuss what is going on. I can’t confide in her. That’s whatyou do with your wife, that’s one of the many values of having awife is that you confide in her, and she confides with you, and youtalk. We used to go to Florida a lot and I really enjoyed it, but thepart I enjoyed most was the two-day ride down and the two-dayride back. You are in the car talking, but she can’t; we went downin February, we talked, but we didn’t carry on a conversation. . . .The thing I miss most is the companionship.

It was evident that some spouses keenly felt a loss of the relationshipthey previously had, even though the person with memory loss had re-tained a degree of independent functioning and appeared relatively nor-mal to others.

The grown children who were interviewed also expressed sadnessand frustration about the way their relationships with the parent withearly dementia had already changed. One daughter, Ms. W., said thatshe and her mother were never very close, yet she’s the one who stayedhome with her parents because she never married and now she was hav-ing difficulty with the role reversal that had occurred:

It was that mother-daughter conflict to begin with, and [now] themother-daughter roles have switched. I have to be the mother andshe has to take the role of the daughter and at times she does not do

Kathryn Betts Adams 15

well with that. . . . And of course, the hardest thing is (crying) that Ihave to be the mother. She is not my mother. I have to do the cook-ing. I have to be the one to discipline if she doesn’t want to dosomething. She cannot watch television until she is dressed andhad breakfast. And you know what, that is what she used to do tome as a teenager and a child! And that is the hard part.

Ms. N., another daughter, echoed these sentiments, saying, “It is cer-tainly not a mother and daughter relationship anymore, it’s just not. Sheis gone. You want to slap her silly and say, ‘Wake you, where are you?’You know, because she still looks the same. It’s still your mom standingin front of you but she can’t act like your mother anymore.”

Negative Emotions

Nineteen out of 20 of the family members interviewed reported somenegative impact and displayed tearfulness during the interviews. The re-actions were primarily expressions of frustration, impatience and an-ger. Several participants reported doubts about their capability to do thejob they’d been given. For instance, Mr. S. said, “I try to control myselfbut I’m not a good caregiver.” Mr. G. stated, “Well, it’s difficult. I don’talways do a good job, but I try. Sometimes I get upset and angry. I amalways sorry that I do.” Some of the family members mentioned hidingtheir frustrations from the person. Mrs. M. reported, “I don’t get angrywith him, I get angry at him, but not verbally.” She later reiterated, “Iget mad at him but I don’t tell him. . . . I get mad at myself in situations.”Some of the family members acknowledged more difficulty handlingangry and frustrated feelings than others. For example, Mrs. L. de-scribes her reactions to her husband, “I vacillate between being extraor-dinarily understanding to being really impatient with this person whowas so brilliant, well, a very smart man, and I think he could do better ifhe’d just work on it. . . . I do a lot of muttering under my breath. I do a lotof going down to the basement and kicking things around.” Mr. P. ad-mitted to taking his anger out on his wife. “I do sometimes let it [beingupset] take over me and it upsets her and I know it does, and I try to limitthat, minimize it and eliminate it. I think we can work that out.”

Occasional comments revealed resentment and hurt toward the per-son with early-stage dementia. Noting that her husband seemed to havelimited awareness of his memory loss, Mrs. M. said, “He doesn’t realizehow much of an inconvenience it is to the people around him. The doc-tor asked, ‘Is he depressed?’ I said, ‘No, I don’t think he’s depressed, I

16 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

am.’ ” Ms. B., one of the daughters, regretted that her mother doesn’tappreciate her help. “She’s always been number one but she doesn’t seethat. . . . She’ll say I’m not treating her nicely, and then I am . . .crushed.”

These relationships may have been conflicted to begin with, but par-ticipants acknowledged that as caregivers, they were the ones who weresupposed to be understanding, flexible and patient. Ms. W., a daughterwho reported that she and her mother never got along very well, saidthat she became very upset periodically: “Basically, I try to rememberwhen I get so frustrated with her that I can’t stand it, to walk away, ei-ther go to my room, or to get out.” Another grown daughter, Ms. Z., alsosaid: “I am feeling guilty all the time because she would like me tospend every minute with her and I have my own life and work. If we hada really good relationship . . . if I had this fund of good feelings to drawon, I wouldn’t find her so irritating.” And another daughter, Ms. N.,echoed, “I know I need to get help with my communication and my pa-tience.”

Mr. B. had a colorful way of recounting his problems with frustra-tion, saying, “Some days you have to grasp onto the patience tree a littlebit more than usual. Because of the repetitiveness, you have to explainsomething . . . some days it’s pretty smooth, and some days, like ‘GeezLouise!’ But as far as patience, it has been a good practice of patiencefor me; it is a human emotion to get whatever it is, anxiety or an itchyfeeling, like ‘Geez come on!’ but then I look at the situation and I justhave to deal with it. . . . ” And Mrs. C., another spouse, also talked abouthow the repeated questions grated on her nerves:

Well, it’s hard for me, it really is, there is no doubt, even thoughyou know it’s a disease and you know it’s not his fault, but to re-peat things . . . like 10 times or something, you know you get veryfrustrated by the end. So it’s hard. Not that it really is, but I dothink it’s almost worse for the caregiver than the one that is goingthrough it.”

Support from Others

Respondents acknowledged help and support from family and friends,but also expressed a number of reasons why their reliance on others waslimited. Although generally the participants in the study felt they werethe person who was most responsible for the person’s care, nearly all ofthem named at least one other relative of the person with cognitive im-

Kathryn Betts Adams 17

pairment who was involved. Family members of these respondents in-variably knew about the situation and offered some kinds of assistance,for example, made regular visits or phone calls, helped with meals, bal-anced the checkbook, drove to doctors’ appointments, and the like.

Some of these participants were ambivalent about asking other fam-ily members for help or sharing too much; fearing they might burdentheir children was common. Mr. D.: “We have two daughters in town,and they’re very good. One is very, very sensitive to every situation, andshe calls often, but she’s very busy, so I don’t call her often.” Doubt thatanyone else could really offer much help was another thought that wasexpressed by several of these family members. For example, Mrs. C.said about her grown children, “Well you know, right now I try not tocomplain to them, because what can they do, and it only upsets them. Imean, they know what he is like when they talk to him, they know ex-actly what he is like. They don’t know everything that happens, becauseI just feel that right now it’s just not something that they need to know.”

Another barrier to reliance on extended family members was the per-ception that they criticize or advise in ways that aren’t helpful. Mrs. L.related that her grown children “are always full of advice, and I say,‘OK, you don’t know what you’re talking about.’ Everyone wants toimprove things but I can’t get it through their heads it’s not going to im-prove.” The underlying sentiment for this spouse appears to be thatwhen other family members try to make suggestions, there is an implicitcriticism of her and the job she’s doing to care for her husband. Anotherrelated finding is that some of these front line family members per-ceived that other relatives don’t understand the extent of the problem.This is true of adult children who don’t live with the person with demen-tia, and of extended family living at a distance. Ms. W. described hersatisfaction at having relatives come and see the situation for them-selves: “My brother and my sister-in-law and my nephew came to visit.I don’t think they realized how bad Mom was. Anyway, my nephewcame and Mom had no concept of who he was. . . . I think they reallysaw.”

Several of those interviewed also mentioned the support of friendsand social acquaintances, for both themselves and for the impaired per-son. On the other hand, talking with friends about the memory loss waslimited for most of these family members. It was notable how many ofthem had not disclosed the diagnosis to anyone at their church or syna-gogue, so the clergy and congregation were not sources of direct sup-port. Mrs. M. described wanting to keep things private: “We havealways been private people. As they used to say, never washed our linen

18 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

in public. . . . ” Mrs. C. also expressed concerns about telling others,more specifically because of how it might affect the way her husband istreated. “I just, you know, don’t want them to think he is not quite with itand treat him as such. . . . But then again, when you get to the point thatmaybe you’re not making sense to them all the time and they knowsomething is wrong but they just can’t figure it out. So it’s probablytime to start telling people.”

Ms. B. reported she did not want to make friends based on the com-mon concerns about having a mother with Alzheimer’s disease. “I knowso many people who have been through this. I have friends that havebeen through the whole thing . . . and I met this other woman with prob-lems with her mother. She said, ‘Call me.’ I didn’t want to be mean, butI don’t think I’ll call her. I didn’t really want to talk with her.” And Mrs.C. expressed the concern that her friends will tire of hearing about hersituation. “Yeah, I have some good friends, but I find, and I don’t carewho it is, I think people want to hear it, but then it comes to a point whenthey don’t really want to hear it anymore. There is nothing they can doto help you really except listen, and they do, but you don’t want to talkabout it so many times either really, because they don’t want that.”

Formal Services. Several participants were already hooked up with ser-vices including Adult Day Care (2), a caregiving support group (1), and acontinuing care retirement community or assisted living (2). These fivewere farther along in the dementia process than the others who were in-terviewed; they were uniformly enthusiastic about the help they re-ceived. Those who had not yet sought formal services expressed anumber of hesitations. First, there was simply the notion that things hadnot gotten to the point where help was needed. As noted above, that con-tinuous process of determining how much to “do for” the person withmemory loss also came into play in thinking about securing formal ser-vices, and several of the interviews revealed conflicting feelings aboutthis process. For example, Mr. P. reported his daughter would usuallycome to their home to stay with his wife while he went to the gym. He’sconsidered getting a more formal arrangement, but expressed a basicdoubt that it is completely necessary: “I am glad someone is with her orI am gonna have to quit going. But I feel as though she is all right athome by herself.” Mr. G. talked about looking into Adult Day Care, butsaid, “I don’t want to have to do that. . . . It’s not easy, to stick your wifein day care. So I have been fighting it. But everybody assured me that Ishould. All the friends. My son is putting a lot of pressure on me to gether to go. But everyone is good at telling you what to do.” On the otherhand, Ms. W., a daughter who had already arranged for her mother to be

Kathryn Betts Adams 19

in Assisted Living, felt that others in the family disapproved of her deci-sion. “These were people who didn’t spend time with her on a daily ba-sis and that was the hardest part. Having people thinking that you wereputting her away somewhere when it was really for her own good andher own safety.”

Another important concern with seeking outside help was the accept-ability to the impaired person. In these early stages, the person withmemory loss or dementia is still participating in decisions about his orher own care, and may have expressed a strong preference not to haveoutside help. As Ms. W. stated, “Mom, downright refuses: ‘I can takecare of myself, I’m safe.’ I keep telling her, ‘Mom, you are not safe.’”Ms. Z. said, “I am pretty aware of the resources, she just won’t usethem.” Mrs. C. alluded to her concern that when the time comes to gethelp caring for her husband, he won’t accept the care from someoneother than herself. As in the case of decision making addressed earlier,she and some of the others revealed the highly interactive, interpersonalnature of negotiating care.

Other participants were dubious about the benefits that they mightexperience. Daughter Ms. W. said, “I know they [services] exist, but Ijust haven’t contacted them. The Meals on Wheels is one, but she’s notthere yet. She’s not to that point. And I’m not sure she would eat it.” Awife, Mrs. T., also spoke of feeling she didn’t need to rush to get ser-vices for her husband. “It’s too early, it’s really too early. And I feel thatit would be nice to go to a support group but I don’t want to get into itwith him because he will become more and more apprehensive, I think. . . I’ll wait.” Some of the other family members interviewed also feltthat they didn’t want to join a support group for themselves. Mr. S. said,“I’d have to listen to someone else’s troubles.” And one of the daughterssaid, “I’m just so tired, between work and running here and there, andeverything else. There is so little time for me, the last thing I want to dois go relive it again.”

Thoughts of the Future: Hopes and Hesitations

Participants were dealing with thoughts of the future in two ways.One way that characterized a few of the participants was active informa-tion-seeking and considering various options, and the other way was topostpone planning for the future at all. A majority of these participantsskirted around issues of progressive deterioration in their loved ones.Several mentioned that they knew “things will get worse.” Mrs. L. saidbluntly, “He’s not going to turn into a productive wonderful human be-

20 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

ing.” Mr. C. tearfully related that a friend of his had told him, “You aregoing to wake up one day and your wife won’t know who you are, soyou better be ready for that.” Yet, the availability of medications forAlzheimer’s disease and other types of memory loss meant that thesefamilies were hopeful about slow progression of symptoms. Mrs. T. al-luded to the promise of medication when she said: “Well, we think ofthe future, of course. And how will this progress and of course, medica-tion. They say this may cause a plateau and help him go for quite awhilewithout any real problems. So I don’t know.” Mr. J. expressed a similarsentiment about his wife: “My goal right now is by the medicine to keepthe deterioration slow, as slow as possible. To keep it still in the MCIrealm without going into the realm of the other symptomology of trueAlzheimer’s. . . . And I can see in-home help in some ways helping outin the future. But we’re not . . . the idea is, I’m hoping to defer that aslong as possible, full knowing I probably won’t [permanently].” Mr. P.also spoke of the medication, “The one thing we do have a lot of hopefor is that . . . she is at a point where she could be at this for years, and theneurologist said she could be doing this for ten, fifteen years.” The hopeafforded by these relatively new medications gave these families per-mission, in a sense, to avoid making decisions about higher levels ofcare for the near future.

Some of these families simply had not gotten to the point of needingextra help, or at least they could not yet envision how that help wouldbecome integrated into their lives. Mrs. C. said, “I really don’t knowwhat the future will bring. You know I can’t dwell on it a lot becausethere are no answers at this point. . . . I have seen how long this . . . reallyhow long this drags on and on and on.” As to her thoughts for the future,Mrs. E. said, “I presume we would have to get somebody. We haven’tplanned anything.” And Mr. L. said, “I’ve thought about it but haven’treally gone much farther than my thoughts, and of course, I will talk tothe family a little more extensively.” Another reason for not making de-cisions on future care was simply the feeling of being overwhelmedenough with things as they are and the desire to wait until it was abso-lutely necessary to get more information. Mrs. M. described how shethought of this:

I just try to keep an eye on when is the time that I know I can’t han-dle it or take it. You know it will, of course, get worse, that I know.‘Cause, I mean, people always keep telling me you need to lookinto places and stuff, and I’m like, you know, Why? I mean, that’s

Kathryn Betts Adams 21

just something if I don’t want to deal with it right now, you know, Iknow I’m going to have to deal with it later.

DISCUSSION

The spouses and adult daughters of individuals with MCI or early-stage ADOD have revealed a number of ways in which the changes intheir loved ones have affected their lives so far. The stories in this studyhave focused on accommodating the impairments, taking on new instru-mental and psychosocial tasks, and experiencing loss of support andreciprocity in their relationships. These changes appear to have begunwell before the functioning of the person was obviously impaired to theoutside observer.

Taking on New Tasks and Negotiating Care. These family membersfound themselves responsible for household and family tasks that oncewere completely or partially within the domain of the person with earlydementia. While they were required to devote more time to domesticand social tasks, the person with early memory loss or dementia typi-cally needed more of their time and energy as well. Repetitive questionsand requests for attention were reported to be a major part of the dailyinteraction for a number of these dyads. A recent report of issues con-fronting spouses of persons with MCI only (Garand, Dew, Easor,DeKosky, & Reynolds, 2005) found that spouses reported experiencingrepeated questioning, forgetting, and misplacing things as the threemain behavioral issues that bothered them. In the current study, as theperson with cognitive impairment became less able to make decisionsand engage in activities independently, sometimes becoming more apa-thetic, decisions regarding the person’s abilities, limitations and dailyroutines reportedly began to fall onto the family member. It may be atthis point that caregiving becomes a reality–the transition from a recip-rocal, egalitarian relationship, to one of caregiver and care recipient–when one person becomes responsible, to any degree, for decisionsabout the needs and activities of another person.

Thus, these family members revealed they are already “caregivers” inmany ways. Their stories presented a picture of a very gradual and some-times subtle shift in responsibilities that accompanied the increased needfor involvement in the everyday life of the person with MCI or mild de-mentia. They were drawn into the caregiving role by the need to offer ex-tensive support, guidance, or supervision rather than actual assistancewith activities of daily living. Most of the care recipients did not need

22 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

physical care or 24 hour supervision, yet caregiving occurred in almostevery aspect of daily life. Unlike caring for individuals in later stages ofdementia, the tasks and decisions of caregiving were interactive andneeded to be negotiated and renegotiated regularly. Because these per-sons with MCI or mild dementia were functioning physically, still com-municating many of their needs, and participating actively in self-careand family life, caregiving could not be cordoned off and separated fromthe rest of these family members’ lives. Every decision and task was per-sonal and relationship-based, and many of the caregiving functions in-volved the input of the care recipient. In this early caregiving role, thespouses or adult children reported experiencing a mixture of complexfeelings towards the person with cognitive impairment–protectiveness,love, and appreciation, along with impatience, frustration, resentment,and disappointment.

Changes in the Relationship. Participants also spoke about the changesand losses in the relationship following the onset of MCI or mild de-mentia in their close family member. The interviews suggested thatthese early caregivers experienced significant “relational deprivation,”characterized by the loss of intimacy, shared activities, and shared fu-ture goals (Pearlin, Mullan, Semple, & Skaff, 1990). Some research hasfound that relational deprivation is worse for spousal caregivers whohave more highly impaired partners (e.g., Bauer, Maddox, Kirk,Burns, & Kuskowski, 2001). With MCI or mild dementia, this reductionin reciprocity in the relationship may be subtle and can be hard to recog-nize. Yet many of the participants expressed that they keenly felt the al-tered state of their relationship, suggesting that even minor changes incognitive abilities may make a difference in what a person can contrib-ute to an intimate personal relationship. Cognitive and emotionalchanges in their loved ones meant they could not confide in and con-verse with their partner or parent in the same way they had. The behav-ioral and affective changes in the person affected the way that personcould relate to the partner or grown child; some of the depth and specialqualities were no longer there.

Even relatively mild changes in their loved ones were also emotion-ally difficult to witness. This was corroborated by a recent study byGarand et al. (2005) which found the most highly endorsed item in abrief “burden” scale administered to a small sample of spouses of peo-ple with MCI was, “I feel it is painful to watch my spouse develop mem-ory problems.” Although many of the participants voiced their sadnessand distress at these highly personal changes, the interviews also dem-onstrated that family members’ grief may be overshadowed by other is-

Kathryn Betts Adams 23

sues, such as protectiveness and concerns about the ongoing needs ofthe impaired person, guilt and negative self-appraisal (worry that he orshe is a “bad caregiver” because of angry and frustrated feelings), orunfocused resentment about the situation. The sense of relational depri-vation may not be acknowledged because in the scheme of things, itdoes not seem a priority. According to Walker and colleagues (1994),while the person with dementia continues to be alive and requires theircare and attention, caregivers’ grief is frequently not expressed or dealtwith, due to the guilt or embarrassment that they would feel about fo-cusing on their own sense of loss.

Attitudes Towards Support and Help-Seeking. A majority of theseparticipants expressed either disinterest in or actual avoidance ofhelp-seeking, even though they admitted to feelings of distress and be-ing overtaxed by the needs of their loved one. It seems that some of theambivalence about asking for or even accepting proffered support fromfamily and friends, as well as hesitations about seeking formal services,may relate to the complex mixed emotions these early caregivers expe-rienced. Feelings of inadequacy as a caregiver, including guilt abouttheir angry feelings towards the person with memory loss, appear tomake it more difficult for people to seek support from others. For exam-ple, if a caregiver feels self-critical, she is more apt to hear others’ sug-gestions or offers of help as criticism. She might be more open to simpleacknowledgment of how hard it is.

Also at work in this early stage there seemed to be a strong desire tokeep things as they were, to stick with familiar routines as much as pos-sible, and to manage without resorting to obtaining extra help. Thesefamily members expressed over and over the desire to hold off, not totalk too much about the situation, not to ask others for help, not to get in-volved with services too soon. Within these interviews, there was littleevidence of excess disability in the impaired persons brought on byjumping to the stage of “doing for” the person with MCI or dementia,but there was quite a bit of evidence of the early caregivers’ desire todeny or minimize their loved one’s level of impairment. Their com-ments suggested that these family members did not wish to publicly em-brace the identity of caregiver or designate their loved one as a “sick” orimpaired person. As noted by Garand and colleagues, “The insidiousnature of symptom onset and progression in persons with dementingdisorders often necessitates that family members assume the role of de-mentia caregiver without publicly identifying themselves as such untilthe middle stages of the disease” (2005, p. 512). Yet there may be adownside to this reluctance to seek or accept help. Recent evidence

24 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

(Gaugler, Kane, Kane, & Newcomer, 2005) suggests that early use ofsome services, such as chore, personal care and companion services,may help delay institutionalization of the person with dementia.

This ambivalent attitude towards help-seeking also appears to helpthe new caregiver maintain the illusion that not much has changed, andmay prevent their beginning to grieve for the losses already incurred orto come. Sanders and Sharp (2004) have noted a connection betweenunrecognized, unresolved grief in caregivers, a denial of the extent ofthe problem, and delay in setting needed limits (e.g., on using the stove,or driving) or in obtaining needed help with care. Among those in thisstudy, it was difficult to judge how much the attitude of maintaining thestatus quo was appropriate and adaptive, and how much the caregiversmay have been suffering undue stress, or causing the impaired personstress, by trying to manage on their own.

IMPLICATIONS FOR SOCIAL WORK PRACTICEAND RESEARCH

This study has identified some of the unique experiences of familymembers of a person with early ADOD or MCI. The persons interviewedwere able to be quite candid about the insidious sorts of emotional andpsychological burdens they were dealing with. The caregiving role maybe taken on very gradually and the effects on new caregivers may not beimmediately obvious. In all of these cases, the family member describedhandling more and more as the person with MCI or mild dementia beganto cede responsibility for tasks and self-direction. These findings need tobe interpreted in the context of a small mostly white sample from onegeographical region which may not be generalizable to other early care-givers. Yet the voices heard in these interviews have added to our under-standing of what this situation is like for some family members.

There may be measurement implications to these findings. Our currentmeasures of caregiver burden and overload tend to focus on later needsfor heavy care and constant supervision. These measures do not tap all ofthe instrumental and psychosocial tasks of MCI or the early stages of thedementia for close family members. In addition, they do not get at the dif-ficulties of making decisions about the person’s capabilities and needs forsupervision, the interactive nature of early caregiving, and the range ofnegative emotions that may be quite a normal part of this experience.

Of greatest importance, there may be service implications. Our mod-els of service delivery may fail to adequately acknowledge and deal

Kathryn Betts Adams 25

with the difficulties faced by couples and families soon after the onset ofmemory impairment or dementia. Findings from this study suggest thatfamily members of persons with early memory loss or dementia strug-gle with guilt and indecision that may make them highly ambivalentabout asking for help. Current service models may offer new caregiversinformation about the anticipated course of the dementia and availablecommunity resources, yet new caregivers may not be offered the oppor-tunity to tell their stories, express their feelings, and have those feelingsvalidated. Without this early emotional support, later issues that arisewhen the dementia has progressed may be more difficult. A recent studyby Kuhn and Fulton (2004) provides a model for a caregiver supportgroup specifically designed for those in the early stages. Furthermore,the participants in this phenomenological study reported many relation-ship issues and revealed the highly interactive nature of decisions anddaily life. This suggests that service models may be beneficial which in-clude both parties in an early-caregiving dyad. For example, a psycho-educational group called “Memory Club” has been reported to success-fully offer information and support for both caregivers and care recipients(Zarit, Fermia, Watson, Rice-Oeschger, & Kakos, 2004).

Social workers are at the forefront in health, mental health, and seniorservice settings where dementia or MCI is diagnosed and disclosed tofamilies. Social workers may be in the position to offer brief supportiveinterventions to family members of newly diagnosed persons thatwould include listening to their stories, recognizing and normalizing theoccurrence of negative feelings such as grief, resentment, and frustra-tion, and supporting their decision-making capacity vis-à-vis the needsand safety of the care recipient and other positive coping abilities. Suchan approach would have the added benefit of helping to identify care-givers who may need additional psychosocial supports to resolve theirnegative feelings and deal with their ongoing responsibilities. Offeringearly support may ultimately help family members to be better care-givers as they embark on this challenging journey.

REFERENCES

Adams, K.B., & Sanders, S. (2004). Alzheimer’s caregiver differences in experience ofloss, grief reactions and depression: A mixed-method analysis. Dementia: The Inter-national Journal of Social Research and Practice, 3(2), 195-210.

Bauer, M.J., Maddox, M.K., Kirk, L.N., Burns, T., & Kuskowski, M.A. (2001). Pro-gressive dementia: Personal and relational impact on caregiving wives. AmericanJournal of Alzheimer’s Disease and Other Dementias, 16, 329-334.

26 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

Bennett, D.A. (2004). Mild cognitive impairment. Clinical Geriatric Medicine, 20, 15-25.Blieszner, R., & Shifflett, P.A. (1990). The effects of Alzheimer’s disease on closer re-

lationships between patients and caregivers. Family Relations, 39, 57-70.Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief. Cambridge, MA:

Harvard University Press.Braekhus, A., Pksengard, A.R., Engedal, K., & Laake, K. (1998). Social and depressive

stress suffered by spouses of patients with dementia. Scandinavian Journal of Pri-mary Health Care, 16(4), 242-246.

Clare, L. (2002). We’ll fight it as long as we can: Coping with the onset of Alzheimer’sdisease. Aging and Mental Health, 6(2), 139-148.

Davis, H.S., & Rockwood, K. (2004). Conceptualization of mild cognitive impair-ment: A review. International Journal of Geriatric Psychiatry, 19, 313-319.

Derouesne, C., Thibault, S., Lozeron, P., Raudouin-Madec, V., Piquard, A., &Lacomblez, L. (2002). [Perturbations of activities of daily living in Alzheimer’sdisease study of 172 patients using a questionnaire completed by caregivers.] RevueNeurologique (Paris), 158 (6-7), 684-700.

Doraiswamy, P.M. (2003). Interventions for Mild Cognitive Impairment and Alzhei-mer’s disease. American Journal of Geriatric Psychiatry, 11, 120-122.

Garand, L., Dew, M.A., Eazor, L.R., DeKosky, S.T., & Reynolds, C.F. (2005).Caregiving burden and psychiatric morbidity in spouses of persons with mild cogni-tive impairment. International Journal of Geriatric Psychiatry, 20, 512-522.

Garner, J. (1997). Dementia: An intimate death. British Journal of Medical Psychology,70 (2), 177-184.

Gaugler, J.E., Kane, R.L., Kane, R.A., & Newcomer, R. (2005). Early community-based service utilization and its effects on institutionalization in dementia care-givng. The Gerontologist, 45, 177-185.

Gaugler, J.E., Zarit, S. H., & Pearlin, L.I. (2003). The onset of dementia caregiving andits longitudinal implications. Psychology and Aging, 18, 171-180.

Hughes, C.P., Berg, L., Danziger, W.L., Coben, L.A., & Martin, R.L. (1982). A newclinical scale for the staging of dementia. British Journal of Psychiatry, 140: 566-572.

Kramer, B.J., & Lambert, J.D. (1999). Caregiving as a life course transition amongolder husbands: A prospective study. The Gerontologist, 39, 658-667.

Kuhn, D., & Fulton, B.R. (2004). Efficacy of an educational program for relatives ofpersons in the early stages of Alzheimer’s disease. Journal of Gerontological SocialWork, 42(3/4), 109-130.

Marwit, S.J., & Meuser, T.M. (2002). Development and initial validation of an inven-tory to assess grief in caregivers of persons with Alzheimer’s disease. The Gerontol-ogist, 42, 751-767.

Meuser, T.M., & Marwit, S.J. (2001). A comprehensive, stage sensitive model of griefin dementia caregiving. The Gerontologist, 41, 658-670.

Morgan, D.G., & Laing, G.P. (1991). The diagnosis of Alzheimer’s disease: Spouses’perspective. Qualitative Health Research, 1, 370-387.

Moustakas, C. (1994). Phenomenological research methods. London: Sage.

Kathryn Betts Adams 27

Noonan, A.E., Tennstedt, S.L., & Rebelsky, F.G. (1996). Making the best of it: Themesof meaning among informal caregivers to the elderly. Journal of Aging Studies, 10,313-327.

Patton, M. Q. (2002). Qualitative research and evaluation methods. Newbury Park, CA:Sage.

Pearlin, L.I., Mullan, J.T., Semple, S.J., & Skaff, M.M. (1990). Caregiving and thestress process: An overview of concepts and their measures. The Gerontologist, 30,583-594.

Pearlin, L.I., & Aneshensel, C.S. (1994). Caregiving: The unexpected career. SocialJustice Research, 7, 373-390.

Ponder, R.J., & Pomeroy, E.C. (1996). The grief of caregivers: How pervasive is it?Journal of Gerontological Social Work, 27, 3-21.

Pruchno, R.A., Michaels, J.E., & Potashnik, S.L. (1990). Predictors of institutional-ization among Alzheimer’s disease victims with caregiving spouses. Journals ofGerontology, 45, S259-S266.

Radloff, L.S. (1977). The CES-D scale: A self-report depression scale for research inthe general population. Applied Psychological Measurement, 1(3), 385-401.

Samuelsson, A.M., Annerstedt, L., Elmstahl, S., Samuelsson, S., & Grafstroem, M.(2001). Burden of responsibility experienced by family caregivers of elderly de-mentia sufferers. Analysis of strain, feelings, and coping strategies. ScandinavianJournal of Caring Sciences, 15(1), 25-33.

Sanders, S., & Adams, K.B. (Nov. 2005). Grief reactions and depression in caregiversof individuals with Alzheimer’s disease: Results from a pilot study in an urban set-ting. Health and Social Work.

Sanders, S., & Sharp, A. (2004). The utilization of a psychoeducational group ap-proach for addressing issues of grief and loss in caregivers of individuals with Alz-heimer’s disease: A pilot program. Journal of Social Work in Long-Term Care, 3(2),71-89.

Schulz, R., & Martire, L.M. (2004). Family caregiving of persons with dementia: Prev-alence, health effects, and support strategies. The American Journal of Geriatric Psy-chiatry, 12(3), 240-249.

Seltzer, M.M., & Li, L.W. (2000). The dynamics of caregiving: Transitions during athree-year prospective study. The Gerontologist, 40, 165-178.

Strauss, A.L., & Corbin, J. M. (1990). Basics of Qualitative Research: Grounded TheoryProcedures and Techniques. Newbury Park, CA: Sage.

Wackerbarth, S.B., & Johnson, M.M. (2002). The carrot and the stick: Benefits andbarriers in getting a diagnosis. Alzheimer’s Disease and Associated Disorders, 16(4),213-220.

Wald, C., Fahy, M., Walker, Z., & Livingston, G. (2003). What to tell dementia care-givers–The rule of three. International Journal of Geriatric Psychiatry, 18 (4), 313-317.

Walker, R.J., Pomeroy, E.D., McNeil, J.S., & Franklin, C. (1994). Anticipatory griefand Alzheimer’s disease: Strategies for intervention. Journal of Gerontological So-cial Work, 22(3/4), 21-39.

28 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

Wuest, J., Ericson, P.K., & Stern, P.N. (1994). Becoming strangers: The changing fam-ily caregiving relationship in Alzheimer’s disease. Journal of Advances in Nursing,20 (3), 437-443.

Zarit, S.H., Fermia, E.E., Watson, J., Rice-Oeschger, L., & Kakos, B. (2004). MemoryClub: A group intervention for people with early-stage dementia and their care part-ners. The Gerontologist, 44, 262-269.

RECEIVED: 02/16/05REVISED: 09/10/05

ACCEPTED: 10/26/05

doi:10.1300/J083v47n03_02

Kathryn Betts Adams 29

For FACULTY/PROFESSIONALS with journal subscriptionrecommendation authority for their institutional library . . .

Please send me a complimentary sample of this journal:

(please write complete journal title here–do not leave blank)

If you have read a reprint or photocopy of this article, would you like tomake sure that your library also subscribes to this journal? If you havethe authority to recommend subscriptions to your library, we will send youa free complete (print edition) sample copy for review with your librarian.

1. Fill out the form below and make sure that you type or write out clearly both the nameof the journal and your own name and address. Or send your request via e-mail todocdelivery@haworthpress.com including in the subject line “Sample Copy Request”and the title of this journal.

2. Make sure to include your name and complete postal mailing address as well as yourinstitutional/agency library name in the text of your e-mail.

[Please note: we cannot mail specific journal samples, such as the issue in which a specific article appears.Sample issues are provided with the hope that you might review a possible subscription/e-subscription withyour institution's librarian. There is no charge for an institution/campus-wide electronic subscriptionconcurrent with the archival print edition subscription.]

I will show this journal to our institutional or agency library for a possible subscription.Institution/Agency Library: ______________________________________________

Name: _____________________________________________________________

Institution: __________________________________________________________

Address: ___________________________________________________________

City: ____________________Return to: Sample Copy Department,The Haworth Press, Inc.,

10 Alice Street, Binghamton, NY 13904-1580

State: __________ Zip: ____________________