More Articles in This Series
ASA's Healthcare and Aging Network is discussing chronic diseases and their management. These recent articles cover a variety of care management and health improvement ideas and practical programs.
Why Measure Patient Engagement?
What It Means to Self-Manage a Disease
By Carol J. Whitlatch
People with dementia and their families face many challenges when adapting to the physical, interpersonal and emotional changes that accompany the loss of cognitive abilities. Families with loved ones in the earliest stages of dementia face unique stressors as they acknowledge and accept that their relative’s personality and identity are changing.
Researchers at the Benjamin Rose Institute on Aging and Penn State University have developed SHARE (Supporting Health, Activities, Resources and Education) to help family caregivers and people with early-stage dementia (PWDs) to prepare for changes that lie ahead. The seven-session program addresses stress risk factors by improving communication between the PWD and their caregiver, building skills and resources and enhancing feelings of self-efficacy.
SHARE increases both care partners’ knowledge of dementia; improves communication skills and support between the PWD and caregiver; and increases understanding of each person’s care values and preferences.
The process by which participants develop a plan of care is unique to SHARE. Magnet boards with magnetic strips representing five care values (independence, not being a burden) and 19 care tasks (help with bathing, eating, dressing, housework) help facilitate an active discussion between PWDs and caregivers.
The magnet boards include a diagram with three circles designating caregiver, family or friends and paid helpers. Magnetic strips representing care tasks are placed into one of the three circles to indicate who the PWD would prefer help him or her with each task. Typically, the caregiver’s circle is overloaded with tasks while the other two circles (help from family or friends and formal assistance) remain relatively empty.
This Circles Diagram provides a visual representation of the caregiver’s extensive workload. Care partners, profoundly affected when realizing the caregiver’s potential overload, work with the SHARE counselor to move tasks from the caregiver’s circle to the other two.
In the end, PWDs and their caregivers develop a care plan reflecting both care partner’s preferences and expectations. Care partners leave the program with a better understanding of memory loss, improved communications skills, a realistic care plan and strategies for maintaining healthy activities.
The SHARE program has demonstrated great success with more than 300 care partners facing the challenges of dementia, and with a handful of care partners dealing with other chronic conditions such as heart failure.
Our experience with SHARE reflects common challenges facing all families with loved ones who have chronic conditions, with or without memory loss. It’s clear that SHARE’s techniques, materials and goals are appropriate for meeting the unique and changing circumstances of a variety of care situations.
Carol J. Whitlatch, Ph.D., is assistant director, Margaret Blenkner Research Institute at the Benjamin Rose Institute on Aging in Cleveland, Ohio. She is also adjunct associate professor in the Sociology Department, and adjunct faculty member at the Mandel School of Applied Social Science, Case Western Reserve University, Cleveland.
This article is brought to you by the Editorial Committee of ASA’s Healthcare & Aging Network (HAN)