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Making Sense of Memory Loss

An Evidence-Based Intervention for Alzheimer’s and Dementia Care

Making Sense of Memory Loss is a training program intended to help families and other caregivers of people in the early stages of Alzheimer’s disease. The Making Sense of Memory Loss program was developed by the Mather LifeWays Institute on Aging and the Greater Illinois Alzheimer’s Association Chapter. It includes:

  • five 2.5-hour modules;
  • a scripted guide for class leaders;
  • a participant’s guide template;
  • handouts; and
  • PowerPoint slides that can be used as overhead transparencies.

The five modules are: 1) overview of memory loss and related symptoms; 2) communication strategies; 3) making decisions; 4) planning for the future; and 5) effective ways of caring and coping.

The Making Sense of Memory Loss program recognizes that the needs and characteristics of people in the early stages of Alzheimer’s disease differ greatly from the needs and characteristics of people in the middle and late stages of the disease. Family caregivers of people in the early stages of Alzheimer’s disease are likely to need help understanding and coming to terms with their relative’s diagnosis, his or her loss of short-term memory and judgment, and changes in their relationship and respective roles and responsibilities. In contrast, family caregivers of people in the middle and late stages of the disease are likely to be dealing with incontinence, behavioral disturbances, the need for full-time supervision, and decisions about nursing home placement. These middle and late stage issues are not of immediate relevance to early stage caregivers and may be frightening and misleading.

The current trend toward earlier detection of Alzheimer’s disease means that more people are being diagnosed earlier, and once diagnosed, they remain in the early stages of the disease longer. As a result, more families are dealing with early stage issues. Since this trend is likely to continue, over time the Making Sense of Memory Loss program will be relevant for an increasing number of caregivers.

The content of the program is based on findings from a series of semi-structured interviews with early stage caregivers (Kuhn, 1998). The program has been used and evaluated with three groups of caregivers. A first evaluation of results with 58 family caregivers showed a statistically significant increase in the caregivers’ knowledge about Alzheimer’s disease from pre- to post-training and nine months later (Kuhn and Mendes de Leon, 2001). It also showed a slight reduction in caregiver reports of being upset about the person and a slight increase in caregiver depression, both post-training and nine months later. The program developers believe the increase in depression may reflect the program’s effect on caregivers’ awareness of the person’s condition and their new caregiving roles and responsibilities.

The second and third evaluations, conducted with 45 and 110 family caregivers respectively, found statistically significant increases from pre- to post-training in caregivers’ knowledge about Alzheimer’s disease and confidence in their ability to provide care. The evaluations also found a statistically significant reduction in caregivers’ reports of being upset about the person and no change in caregiver depression (Kuhn and Fulton, 2004).

The Knowledge about Memory Loss and Care (KAML-C) test that was used to measure family caregivers’ knowledge about Alzheimer’s disease in all three evaluations has now been shortened and validated. It can be found in the article by Kuhn et al. (2005) cited below. The 15-item test can be used to evaluate the results of the Making Sense of Memory Loss program or any other program intended to improve caregivers’ knowledge about the disease and care for people in its early stages. Test users should be aware that the correct answer to some questions may change in the future; for example, the answer to a question about what services Medicare covers will change in 2006, when the new Medicare prescription drug benefit goes into effect.

Since a generally accepted definition of early stage Alzheimer’s disease does not exist, there are no precise criteria for determining which family caregivers should be invited to participate in the Making Sense of Memory Loss program. For evaluation purposes, Kuhn et al. selected caregivers of people with a diagnosis of Alzheimer’s disease, mental status test scores indicating mild dementia, and no significant behavioral symptoms. They have found that when the program is described to potential participants as focusing on issues in early stage Alzheimer’s care, it attracts caregivers who are likely to benefit from that focus.

For more information about the program, contact Mather LifeWays by phone (888) 722-6468 or Daniel Kuhn, MSW, by email Dkuhn@matherLifeWays.com or phone (847) 492-6813.

Publications:

Kuhn D. (1998). Caring for relatives with early stage Alzheimer’s disease: An exploratory study. American Journal of Alzheimer’s Disease and Other Dementias. 13(4):189-196.

Kuhn D., and Fulton BR. (2004). Efficacy of an educational program for relatives of persons in the early stages of Alzheimer’s disease. Journal of Gerontological Social Work, 42(3/4):109-130.

Kuhn D, King SP, Fulton BR. (2005) Development of knowledge about memory loss and care (KAML-C) test. American Journal of Alzheimer’s Disease and Other Dementias. 20(1):41-49.

Kuhn D, and Mendes de Leon C. (2001). Evaluation of an educational intervention with relatives of persons in the early stage of Alzheimer’s disease. Research on Social Work Practice, 11(5):531-548.




Last Modified: 12/31/1600