| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|
| ||||||||||||||||||||||||||||||||
Correspondence: Address correspondence to Steven H. Zarit, Penn State University, Henderson Bldg. S-211, University Park, PA 16802. E-mail: z67{at}psu.edu.
 |
Abstract |
|---|
Key Words: Early dementia • Psychoeducational treatment • Dyadic treatment
Most programs and educational materials currently found in the literature focus on family caregivers assisting someone with middle- to late-stage dementia. Many of the issues discussed in these programs may not be appropriate for early-stage caregivers (Kuhn, 1998), and they do not incorporate the perspective of the person with dementia. Proponents of early-stage interventions have identified several needs for people with early-stage illness and their family members, including improving communication between the couple, learning coping strategies for dealing with memory loss, addressing relationships with family and friends, finding ways for the person with dementia to continue to feel useful, experiencing grief and loss, and learning about the disease and treatment options (Clare, 2002; Kuhn, 1998). Clare noted that adaptation efforts have to strike a balance between fighting the disease and coming to terms with it and the limitations it imposes. Several early-stage interventions have been proposed to address these needs. Clare and colleagues (Clare, Wilson, Carter, & Hodges, 2002, 2003) reported considerable success by using errorless learning principles for improving memory performance, demonstrating both immediate and long-term gains. Moniz-Cook and colleagues (Moniz-Cook, Agar, Gibson, Win, & Wang, 1998) found that a brief individualized intervention at the time of diagnosis that included information about the disease, attention to coping, memory management, and referral to community agencies resulted in better outcomes for people with dementia and their family caregivers than a control group who received usual services. Perhaps the most widely available intervention has been early-stage support groups (e.g., Goldsliver & Gruneir, 2001; Yale, 1989, 1999). According to Yale (1999), early-stage groups help people with dementia to reduce feelings of isolation, increase knowledge about resources, and facilitate grief work. Early-stage support groups also help the caregiving dyad function as a team and communicate more effectively with each other about current problems and concerns for the future.
|
The Memory Club Program |
|---|
|
Each of the 10 sessions is structured around a topic, as shown in Table 1. The first two sessions build group cohesion and provide an information base to use in later discussions. Sessions 3 through 7 explore more difficult topics such as the emotional and interpersonal consequences of diagnosis, the impact of diagnosis on the dyad, and coping strategies through which participants may gain a sense of comfort or strength. The last three sessions represent a return to informational topics. Of course, participants may bring up concerns off schedule. The leaders are trained to respond flexibly, and devote time to exploring an off-schedule issue, while coming back to the week's agenda when appropriate. The leaders also show flexibility in responding to an acute problem, should one arise.
Several specific therapeutic strategies are used in the Memory Club groups to facilitate positive changes. A distinct feature of the Memory Club is its emphasis on solving problems through the dyad. Similar to marital therapy, Memory Club emphasizes strengthening the couple's relationship (whether marital or parent–child). Unlike marital therapy, however, the Memory Club recognizes that the diagnosis of AD carries with it such devastating implications for the relationship that it is necessary to spend some time working separately to strengthen individuals so that they can work more effectively as a couple.
The other main therapeutic approach is to use the group setting and interactions to build cohesion and support. As in typical support groups, there is an emphasis on the unique kind of support that comes from people who understand and are experiencing similar challenges. The leaders encourage and, if necessary, model supportive and nonjudgmental interactions among all the participants so that people may feel understood and accepted. This type of supportive interaction is useful for care partners, who may feel cut off from their social circles, but particularly for the person with dementia who may have very limited opportunities to interact with other people with a similar disorder. Once a supportive atmosphere is fostered, it becomes easier for participants to utilize the information that is provided and to work through difficult personal and interpersonal issues related to the dementia.
The program's innovation is in how sessions are organized. Each session includes the following: (a) an initial period in which the people with dementia and their care partners interact together; (b) a period in which they meet separately so that each can discuss individual and unique concerns with peers, but apart from their partner; and (c) a concluding period during which everyone gets back together. The topic for that day is the focus in each part of the session. The separate portions of a session provide a safe haven for people to explore normal feelings of anger, frustration, fear, or sadness, and to discuss concerns that an individual might not be ready or able to bring up with his or her partner. Care partners are typically more ready to take advantage of these sessions, though the supportive atmosphere is essential in helping them overcome their fears about facing the future or discussing their concerns openly. The leaders of the separate sessions for people with dementia must work harder to build trust and communication, but in the end they can create a nonjudgmental and supportive environment in which people can bond with one another and explore their concerns. The separate sessions are also used for discussing and planning what to share or bring back to the dyad.
The role of the leaders is essential for facilitating change. The leaders model a nonjudgmental attitude, and they provide empathy and emotional support as participants explore difficult issues. They draw in people who may be having difficulty participating, and they keep one or two people from dominating a session. They also set a balance between giving sufficient time to explore personal issues and keeping the agenda moving. They serve as resources for the group, providing information on a variety of topics from medications for dementia to long-term care options.
Care partners and people with dementia respond to the topics and issues discussed in the groups in somewhat different ways. Table 2 summarizes how care partners and people with dementia discuss key issues. Much of the concern of care partners is anticipation of how their relationship will change over time. Considerable emphasis is placed on helping care partners gain insight into why people with dementia behave the way they do, such as learning to view suspiciousness as part of the disease rather than as directed personally at them. Once they understand the impact of the disease, they can move beyond their anger or upset to adopt more flexible coping strategies for these types of behaviors.
|
|
Recruitment and Screening |
|---|
Two factors enhanced recruitment: First, staff at CARE and the Memory Club had strong relationships with geriatric assessment programs and aging service programs in the area. Second, grant support meant that the Memory Club could be offered for no charge.
Screening played an essential role in the Memory Club. It was used determine that the person with dementia had the necessary awareness of his or her illness to benefit from the group discussions and to identify if either the care partner or person with dementia had other characteristics or beliefs that would make it difficult for him or her to benefit from a group treatment. An initial telephone screening was conducted with care partners to determine if the person with dementia's level of impairment was appropriate and if the dyad could attend all the planned sessions. The main screening was conducted with in-person interviews with care partners and people with dementia. The interviews reviewed prior diagnostic work and current problems to ascertain a probable diagnosis of AD or other dementia. The person with dementia could have any dementia diagnosis, though people with primarily psychiatric symptoms (consistent with frontal dementia and Lewy Body dementia) were excluded. A Mini-Mental State Examination (MMSE) was conducted on the person with dementia if it was not available at the time of the prescreening interviews. Most people in the program had an MMSE score of 25 or higher. However, the MMSE score was not used as a deciding factor; inclusion was based on the person's awareness of memory loss. Individuals were screened out of the program if they were unable to recognize changes in themselves, such as the inability to work or drive safely, or if they could not acknowledge their memory problems. These people had a form of denial that was often intractable and made participation in discussions of their illness nearly impossible.
Fifty dyads were initially identified through recruitment efforts, from which 24 were selected for the first three Memory Club programs. The most common reasons for excluding a dyad were as follows: appearing unable to be in a group without excessive restlessness, having hearing problems that would interfere with participation, having unrealistic expectations about the Memory Club (e.g., to convince someone in denial that he or she has AD), disagreement within a dyad about wanting to participate in the Memory Club, significant psychiatric symptoms (e.g., severe depression or delusions) that would interfere with participation, and schedule conflicts that would limit the dyad's participation.
After the screening, the dyads met the group facilitators, received a schedule of meetings, and signed a "contract" concerning their participation. The contract addressed issues such as the number of meetings, that there was no charge for the group, and confidentiality issues.
|
Preliminary Evaluation of the Memory Club |
|---|
|
Characteristics of Participants in the Memory Club |
|---|
|
|
Participants Evaluation of Components of the Memory Club |
|---|
Overall, care partners were very positive about the group (Table 4). Their most positive ratings were for the performance of the group leaders, the information they received, and being with other people in a similar situation. Their lowest scores, which fell in the very good range (
3.0), were on these items: "Learning more about your relative's feelings" (3.09) and "How well the other members of the group understood you" (3.13). Two thirds of care partners rated the time they spent together in the group with their relative as very helpful or extremely helpful. In addition, all 23 care partners said they would definitely recommend the Memory Club to someone else in a similar situation.
|
|
Qualitative Evaluations of the Memory Club |
|---|
Many of the people with dementia mentioned that they liked the opportunity to be with friendly, supportive people. They also liked being able to learn from other people in their situation. One person stated, "What is very helpful about the program is that we can very freely talk about our feelings or express them with each other. We cannot do this in other groups. It is a healthy thing when you can go and express things freely." Another person stated what was helpful about the group was "to know I was not alone. To hear how others were dealing with issues I was struggling over. The support I felt was very important from others in the group and the leaders." A few persons with dementia identified aspects of the group that were not helpful. Two people noted that someone in their group talked too much. One person thought that the sessions were too short, and another thought that the group should have been a little smaller.
Another important result is that all but three of the care partners have continued to attend follow-up groups that were made available following completion of the 10 planned sessions. Many of the people with dementia also moved on to appropriate supportive programs, such as early-stage day care.
|
Discussion |
|---|
The structure of the groups, which provided time for the dyad to be together and time when they were apart with their peers, was a key to the success of the program. In the separate portions of the sessions, issues could be discussed candidly, in ways that probably were not possible in the dyadic portions of the meetings. The separate sessions were also used to build the special support that comes from interacting with people in the same situation, an aspect of the program that both care partners and persons with dementia reported was valuable to them. In the dyadic portions of the sessions, it was then possible to address issues affecting the dyad, and how they were dealing with memory loss and its consequences. In contrast to typical family support groups, there was a constant pressure to go beyond an individual's expression of needs or concerns that came up in the separate sessions, and to find ways of reshaping those concerns into communications in the joint sessions that could help strengthen the dyad.
The social aspects of the experience may have been most helpful to both care partners and persons with dementia. The Memory Club is about bonding and learning that it is safe to discuss what seemed too hard to talk about. It is about maintaining trust and discussing conflicts. As dyads grow increasingly comfortable talking about their situation, they may even discuss long-standing family problems that may be worsened by AD.
Another feature of the Memory Club was that the dyad was able to plan for their future, both in the separate sessions and when together. The person with dementia was often (though not always) able to take an active role in making decisions. For example, the session of the Memory Club that focused on legal issues prompted couples to discuss their needs for planning in areas such as health care decision making and financial affairs. Many persons with dementia were able to articulate their preferences (in the group and later to their attorney) for what should happen when they were no longer competent to make decisions. Other decisions in which persons with dementia played an active role included leaving a job, trying a medication for memory, enrolling in the Safe Return program, and discussing one's illness with family and friends. One person with dementia recounted how the group helped him survive having to give up driving. He went on his own to the Department of Motor Vehicles to get his ID card (which replaces the driver license). He has now learned how to use the bus and incorporates regular walks in his routine. The program thus confirms other reports (e.g., Yale, 1999) that people with early symptoms of dementia can participate in programs focused on their illness and can provide meaningful observations of their experiences.
In a preliminary evaluation of the Memory Club, care partners and people with dementia gave high ratings to various features of the Memory Club, indicating that the program was accepted and meeting its objectives. Given the emotionally charged discussions about the implications and course of dementia that care partners and persons with dementia engaged in, it is noteworthy that participants had strong positive opinions about the program.
There are some obvious limitations in this report. The evaluation of the Memory Club has to be viewed as preliminary. There was no possibility of a control group or random assignment, given the resources available to the program. There were no data beyond clinical report on treatment fidelity, that is, how consistently leaders were able to implement various features of the intervention as planned. We also do not know how well the program could be replicated in a different setting or with different leaders. Despite these limitations, the Memory Club has demonstrated that people with dementia can participate in the intervention and also in its evaluation.
|
Footnotes |
|---|
1 Gerontology Center, Penn State University, State College, PA.
2 The Center for Aging, Research and Evaluation, Granada Hills Community Hospital, Granada Hills, CA.
3 The Los Angeles, Riverside and San Bernardino Chapter of the Alzheimer's Association, Los Angeles, CA.
Decision Editor: David E. Biegel, PhD
Received for publication August 6, 2002. Accepted for publication April 28, 2003.
|
References |
|---|
This article has been cited by other articles:
 |
|
 |
|
  M. Schmitter-Edgecombe, J. T. Howard, S. P. Pavawalla, L. Howell, and A. Rueda Multidyad Memory Notebook Intervention for Very Mild Dementia: A Pilot Study American Journal of Alzheimer's Disease and Other Dementias, October 1, 2008; 23(5): 477 - 487. [Abstract] [PDF]
|
|
|
|
 |
|
 K. Betts Adams, M. J. McClendon, and K. A. Smyth Personal losses and relationship quality in dementia caregiving Dementia, August 1, 2008; 7(3): 301 - 319. [Abstract] [PDF]
|
|
|
|
|
|
S. C. Burgener, Yang Yang, R. Gilbert, and S. Marsh-Yant The Effects of a Multimodal Intervention on Outcomes of Persons With Early-Stage Dementia American Journal of Alzheimer's Disease and Other Dementias, August 1, 2008; 23(4): 382 - 394. [Abstract] [PDF]
|
|
|
|
 |
|
 H. L. Menne and C. J. Whitlatch Decision-Making Involvement of Individuals With Dementia Gerontologist, December 1, 2007; 47(6): 810 - 819. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
L. Snyder, C. Jenkins, and L. Joosten Effectiveness of Support Groups for People With Mild to Moderate Alzheimer's Disease: An Evaluative Survey American Journal of Alzheimer's Disease and Other Dementias, February 1, 2007; 22(1): 14 - 19. [Abstract] [PDF]
|
|
|
|
|
|
C. J. Whitlatch, K. Judge, S. H. Zarit, and E. Femia Dyadic intervention for family caregivers and care receivers in early-stage dementia. Gerontologist, October 1, 2006; 46(5): 688 - 694. [Abstract] [Full Text] [PDF]
|
|
| ||||||||||||||||||||||||||||||||
| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|
TOP
Abstract
The Memory Club Program