alzhiemerTeamMom forgets where she's put things and accuses the neighbor of stealing from her. Dad hasn't changed his clothing in days and refuses help with grooming.
There is little doubt that Alzheimer's disease decreases quality of life in profound ways, affecting not only cognitive abilities but also feelings of personal dignity. As social skills diminish, individuals can become isolated and depressed. Both home caregivers and residential facilities struggle to provide quality care under challenging conditions.
Although many new treatment options promise delays in cognitive decline, their effect on quality of life is largely unknown. What can afflicted individuals do to prolong their feelings of independence and decrease strain on family caregivers? How can they be helped to enjoy pleasant events and decrease agitation? With major grants funded by the Alzheimer's Association and the National Institute on Aging, three researchers from the School of Nursing are asking these and many other important questions about the effect of Alzheimer's disease on everyday life. Most importantly, they are asking these questions to the afflicted individuals themselves.
With a Pioneer Award from the National Alzheimer's Association honoring her leadership role in Alzheimer's research, team leader Linda Teri developed an educational program for direct care staff in long-term care facilities that has the potential for improving care for dementia patients at facilities around the country. Colleague Rebecca Logsdondeveloped the first quality of life measurement tool for individuals with Alzheimer's disease, and fellow researcher Susan McCurry published the first sleep study focusing on caregivers of individuals with dementia. These are but a few of the major breakthroughs by these researchers, who are all nursing faculty in the Department of Psychosocial and Community Health.
Teri says that she feels very fortunate to work with Logsdon and McCurry, who are former post-doctoral students. "They began their training here and then stayed on," she explains, "allowing us to work together continually for over a decade."
GROUNDBREAKING 'STAR' PROGRAM
Teri's ground-breaking program - Staff Training in Assisted Living Residences, or STAR - identifies strategies for dealing with behavioral disturbances such as agitation or anxiety so that individuals can stay in place and continue receiving the best possible care. The program was developed in collaboration with ERACare, the leading retirement housing provider in the Puget Sound area, and includes site support to tailor the training to the needs of each facility. The STAR project is designed to assist nursing aides and certified nursing assistants with the direct, day-to-day care of individuals with Alzheimer's disease and other forms of dementia. It also includes a scientific follow-up evaluation of the program's effectiveness.
In a second study designed to decrease the numbers of individuals requiring residential placement because of physical or mental decline, Teri is developing a program to assist frail adults over the age of 70 maintain their independence for as long as possible. Subjects who are beginning to have difficulties with the activities of daily living are being recruited through Group Health in Washington. The subjects will participate in different group activities designed to increase their mental and social functioning, physical functioning, or both. They will then be compared for improvements in the ease with which they complete daily living activities as well as differences in their moods and medication requirements. This will be achieved with personal interviews and other tools that include measures of self-efficacy: confidence in your own abilities even when you are experiencing personal setbacks.
ASSESSING QUALITY OF LIFE IN ALZHEIMER'S
Recognizing that the person with cognitive impairment still has something to say has been the foundation of Rebecca Logsdon's eight years of research. "Ten years ago we relied on caregivers for information about people with dementia," Logsdon says. "Now we recognize that just because you have dementia does not mean you cannot report on your own emotional state, preferences and quality of life. This discovery has been empowering for many people with dementia."
Logsdon's first study involved developing a measure to assess quality of life in individuals with Alzheimer's disease. In this investigation, funded by the Alzheimer's Association, she and her team developed and validated an instrument, the Quality of Life-AD, which is now being used by investigators throughout the world. The QOL-AD was the first to provide an assessment of quality of life from the perspective of the person with dementia, and is still the only measure that incorporates both the person with dementia and the caregiver's perspective of quality of life.
In a second, five-year project, funded by the National Institute of Aging, Logsdon and her research team have conducted home interviews with two hundred subjects with Alzheimer's disease and their caregivers over a three-year period to identify factors that are associated with changes in quality of life. These include cognitive, physical, functional, psychological, interpersonal and environmental changes. The results will help in the development of interventions to maintain good quality of life throughout the progression of Alzheimer's disease.
In a third study, Logsdon is evaluating quality of life for people who live in assisted living dementia care units. Funded by the Washington Department of Social and Health Services, this project will help identify ways to provide appropriate and high quality services to people with dementia who need daily assistance but do not require skilled nursing care. "We have many older people now living much longer lives," notes Logsdon. "The cost to individuals, families and society will be overwhelming if we do not find appropriate, high quality and efficient ways to care for them."
SLEEP IN DEMENTIA CAREGIVERS
Susan McCurry's research has also been instrumental in improving the daily lives of people with dementia and their caregivers, this time in the area of sleep disorders. In her first study, McCurry studied how common sleep complaints were among family caregivers of dementia patients, and what factors contributed to those complaints. Almost 75% of 136 caregivers she interviewed had trouble falling or staying asleep at night, and complained of daytime fatigue. Caregivers with sleep problems were also more depressed and tended to be caring for persons who had problems with daily functioning. McCurry subsequently conducted the first published sleep treatment study with dementia caregivers. Using a behavioral program to teach caregivers good sleep habits and strategies to reduce stress in their caregiving situation, she was able to obtain significant improvements in caregiver sleep after one month that were maintained at a 3-month follow-up.
McCurry found that many caregivers have problems sleeping because the dementia patient they live with wakes them up during the night. Sleep disturbances in Alzheimer's disease and other forms of dementia is one of the main reasons people are unable to continue living at home. In her current research, McCurry is investigating effects of a treatment designed to improve sleep in community-dwelling persons with dementia. Because the use of medications to induce sleep can lead to increased confusion, falls, and daytime sleepiness, McCurry is testing a program that includes increased exposure to light, daily physical activity, and improved sleep hygiene habits. Her research will also provide new and important information on how medical illness, mood disturbances such as anxiety and depression, and conflictual family relationships may contribute to the development or maintenance of sleep problems in persons with dementia.
"As our population ages," notes Teri, "The priority becomes not how long we live but how well we live. The work that all of our research teams are doing will greatly improve life for older adults in the years ahead."
CREDIT: Members of the Alzheimer's Research Team: Back Row (Lto R): Laura Gibbons, Cathy Blackburn, Joanne Webb, Amy Moore, Margaret Anderson; Middle Row: Sally Fitts, Sue McCurry, Linda Teri, June van Leynseele; Front Row: Rebecca Logsdon, Katie Carter, Julie Cleveland, Raymond Houle