Caring for People with Alzheimer's Disease


Caring for people with Alzheimer’s disease presents special challenges, particularly toward the end of life. As the search for more effective interventions continues, it remains critical to improve the care and comfort of people with Alzheimer’s, to ease the transitions through the stages of disease and dying, and to provide practical advice and emotional support for often overburdened family caregivers.

End-of-Life Care

Health care transitions—moving between home, nursing care facilities, hospitals, and hospice—in the last months of life can be burdensome and of limited clinical benefit for people with advanced cognitive impairment. A team led by Brown University, Providence, RI, researchers looked at end-of-life transitions among nearly 500,000 cognitively impaired nursing home residents (Gozalo et al., 2011). Of those individuals, almost one-fifth (19 percent) experienced at least one burdensome transition, including a transfer between health care facilities during the last 3 days of life, a lack of continuity of nursing home facilities during the last 90 days of life (i.e., moving from one nursing home to the hospital to a different, unfamiliar nursing home), and/or multiple hospitalizations during the last 90 days of life.

Such transitions can be especially stressful for cognitively impaired people and their families because they are physically difficult, can increase confusion, and often do not address the special needs of person with Alzheimer’s, such as assistance with feeding. The researchers suggest that unnecessary transitions from nursing homes to hospitals may be avoidable because nursing homes can effectively treat common complications in residents with advanced dementia, such as pneumonia and urinary tract infections.

Feeding problems are extremely common in dementia and can affect as many as 85 percent of nursing home residents with advanced dementia. Family members and other caregivers often need to make difficult decisions about feeding, such as whether to use a feeding tube, with little guidance or information. A randomized, controlled trial led by investigators at the University of North Carolina, Chapel Hill, tested whether a “decision aid” could help this process (Hanson et al. 2011). The decision aid provided easy-to-understand information about the advantages, disadvantages, and outcomes of different feeding options and discussed the decision-maker’s role.

Caregivers and other decision-makers for 256 nursing home residents with advanced dementia received either the decision aid intervention or no intervention. Compared with controls, study participants using the decision aid reported feeling more confident about their decisions and better understood dementia and feeding options. They were also less likely to use feeding tubes and were more likely to have discussed feeding options with a health care provider. These findings suggest that using a feeding-options decision aid may improve decision-making for caregivers of people with advanced dementia.

In the final stages of Alzheimer’s dementia, most people require full-time care in nursing homes. Research has shown significant problems with end-of-life care in nursing homes, including inadequate treatment of chronic and severe pain and high rates of unmet resident needs. In addition, nursing home residents with dementia often undergo stressful and expensive medical treatments in the last months of their lives.

A study led by investigators at Brown University, Providence, RI, showed hospice services can improve the quality of end-of-life care as perceived by family members (Teno et al., 2011). The researchers studied surveys completed by more than 530 family members of demented residents who had died in five different states (Alabama, Florida, Texas, Massachusetts, and Minnesota). Most of the residents had died in nursing homes, and about half of them had received hospice services either in the nursing home or at home. Families of residents who had received hospice services reported significantly fewer unmet resident needs and concerns about the quality of care than families of resident who did not receive hospice services. They also reported a better end-of-life experience for their loved ones.

Medicare and Medicaid payments for people with dementia are estimated to be roughly three times higher than for cognitively normal older people. To understand factors associated with Medicare expenditures for dementia patients, a team led by Columbia University, New York City, researchers followed more than 300 people with advanced dementia in 22 facilities for 18 months (Goldfeld et al., 2011). They found that Medicare expenditures increased near the end of life, largely due to increasing use of acute care and hospice services. This pattern was due in part to people lacking advance directives. Use of a feeding tube and not living in a specialized dementia care unit also raised costs. Roughly one-third of all Medicare expenditures were for hospitalizations.

Hospital transfers are particularly difficult for people with advanced dementia, and most hospitalizations in this group were for conditions, such as pneumonia, that might have been treated as effectively and at lower cost in a nursing home setting. The strong association in this study between lack of a Do Not Hospitalize order and higher Medicare expenditures suggests that advance care planning may be a key step in preventing aggressive end-of-life care and may also reduce Medicare costs.

New Approaches to Dementia Care

Recent years have seen the development of collaborative dementia care models, which integrate and deliver medical and psychosocial interventions in a coordinated way for both people with dementia and their caregivers. University of Indiana, Indianapolis, researchers reported on one novel care program, the Healthy Aging Brain Center. (Boustani et al., 2011).

Part of the Indianapolis pubic health care program, the Center’s program involves several components, including full neuropsychological and medical diagnostic workups at the time of patient enrollment; development of a personalized patient care plan; follow up care through phone and in-clinic assessments, including monitoring of chronic medical conditions (e.g., diabetes, vascular disease); caregiver education that includes training in patient care and self-management skills and help with financial and legal planning; support groups for patients and caregivers; active monitoring and support of the caregiver’s emotional and physical health; and facilitation of communication among the patient’s care providers.

Within its first year of operation, the Center’s staff made more than 500 visits to serve some 200-plus patients and nearly an equal number of caregivers. This report describes how a health care model developed in a research setting can be translated into a practical health care delivery program. Significantly, even though the Center operates as a special service that supports primary care, the quality of dementia care improved among primary care patients who had at least one visit to the Center—they had fewer emergency room visits and hospitalizations.

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