Perhaps one of the greatest costs of AD is the toll on families, caregivers, and friends. Investigators supported by NIA, NIMH, and the National Institute of Nursing Research (NINR) are exploring the emotional, psychological, and physical costs of caregiving and are investigating ways to ease the burden. Here are a few highlights of recent research.
Improving the Chances of Success in Assisted Living
Assisted living is a popular option for older adults, yet little is known about the impact of cognitive abilities, moods, and overall health on how well people in these facilities function. NIMH is supporting the Maryland Assisted Living Study to improve researchers’ knowledge about this important issue. A study team from the Johns Hopkins University School of Medicine has looked at 22 facilities to determine the prevalence, recognition, and treatment of dementia and other psychiatric disorders (Rosenblatt et al., 2004), and to examine factors that impair people’s ability to function well
(Burdick et al., 2005).
In the first study, the Johns Hopkins team found that dementia and psychiatric disorders were common—nearly 68 percent of the 198 participants had dementia and 26 percent had a psychiatric disorder—and that recognition and treatment were not as good as they could be. In the second study, the researchers found, not surprisingly, that cognitive difficulties, memory problems, depression, and poor overall health had a significantly negative impact on the residents’ ability to carry out their daily activities. Results from both of these studies may help assisted living facilities develop models of care that improve recognition of dementia and psychiatric disorders, incorporate key predictors of functional impairment, and improve resident care.
Helping People Express Care Preferences
All caregivers want to provide care that reflects the lifelong values and preferences of the person with AD. As the disease progresses and the person’s ability to form ideas and express thoughts diminishes, it becomes increasingly difficult to gauge these preferences. It is all the more important, therefore, to help people with AD and their families articulate these preferences early, when it is possible to discuss them
and plan for the future.
NIMH-supported scientists at the Margaret Blenkner Research Institute, in Cleveland, Ohio, have developed and validated just such an approach (Whitlatch et al., 2005). The Values and Preferences Scale, a 24-item questionnaire that can be used in research or practice settings, was developed with the help and advice of practitioners, researchers, family caregivers, and people with cognitive impairment.
Finding Low-tech Solutions for Behavioral Symptoms
Bathing can be one of the hardest aspects of AD caregiving because it often triggers agitation and aggression in the person with AD. A research group at the University of North Carolina developed and tested two methods of bathing—person-centered showering and a new type of in-bed bath with no-rinse soap called a towel-bath (Sloane et al., 2004). Agitation and aggression declined significantly with the new methods. Both methods also improved skin condition and neither increased potentially harmful skin bacteria. Simple interventions like these can easily be learned and applied to improve the quality of life of the person with AD and ease the burden on family caregivers.
Researchers at Pennsylvania State University explored a different kind of solution. They tested different types of recreational activities to see which might be best at lessening agitation and passivity, two common problems among nursing home residents (Kolanowski et al., 2005). They compared activities that only matched residents’ interests, activities that only matched their skills, and activities that reflected both. Though all three types of activities lessened agitation and negativity, the interest-only and combined activities had the greatest positive effect. The authors suggest that these findings can help explain factors that produce behavioral symptoms and can help care facilities successfully tailor activities for residents with dementia.
Improving Support for Caregivers
Recent studies have contributed to a growing understanding not only of the burdens of caregiving, but of the wide range of physical and psychological reactions that caregivers have and to their diverse needs for support at various stages of caregiving. Resources for Enhancing Alzheimer’s Caregiver Health (REACH) is a long-term caregiver clinical trial supported jointly by NIA and NINR. Findings from Phase I of the project have clearly shown that social service and medical contacts and support interventions must be culturally appropriate and sensitive to the factors that influence (both positively and negatively) caregivers’ attitudes to their caregiving responsibilities.
These findings have been applied to the second phase of the clinical trial, REACH II, and results have just been published (Belle et al., 2006). The REACH II study included more than 600 Hispanic, white, and African-American dementia caregivers in five locations around the country. Caregivers within each ethnic/racial group were randomly assigned either to an intervention or a control group. Caregivers in the intervention group received intensive help with caregiving strategies through information sharing, instruction, role playing, problem solving, skills training, stress-management techniques and telephone support groups. Those in the control group received a packet of dementia education materials and two brief “check-in” telephone calls.
After 6 months, improvements in overall quality of life were significant among the caregivers who took part in the intervention. Clinical depression also was significantly lower.
Caregivers in the intervention group reported that taking part in the program helped them feel more confident in working with their loved one, made life easier for them, improved their caregiving ability, improved the care recipient’s life, and helped them keep their loved one at home. Many members of the control group said they also benefited from participating in the study, suggesting that even minimal support and attention can help caregivers.
Based on these results, investigators hope that the REACH approach can be used widely in the community, especially if the outcomes are replicated by others and the program is found to be cost-effective.
<< Back | Next >>
