Making Sense of Memory
Loss: (Download
Word Version)
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.
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