Caring for People with Alzheimer’s Disease


caregiver's hand touching older person's handCaring for people with Alzheimer’s disease presents special challenges. Even as the search for more effective interventions continues, new approaches to improve the care and comfort of people with Alzheimer’s are being developed. Researchers are also taking a closer look at how people with Alzheimer’s and their families make use of current Alzheimer’s care systems in an effort to identify which components of these systems are most critical to target in efforts to improve quality of care.

Regional Network Connects Research, Care Delivery

The Indianapolis Discovery Network for Dementia (IDND) has pioneered a “think tank” approach to dementia care that involves collaborations among health care providers, clinical researchers, and community advocates from more than 30 local organizations in the central Indiana area (Boustani et al., 2012). Established in 2006 and funded in part by NIA, the IDND now has more than 250 members representing 20 professional disciplines and a Web site that averages more than 12,000 hits per day.

The network has produced multiple clinical tools, including two that are now used in clinics worldwide. The first tool, the Anticholinergic Cognitive Burden Scale, evaluates potential cognitive side effects of over-the-counter and prescription drugs commonly prescribed to older people. The other tool, the Healthy Aging Brain Care Monitor, is a clinical assessment tool for screening, diagnosis, and management of dementia. The IDND’s research-driven, collaborative approach could be a model for other regional networks aimed at advancing dementia care.

Identifying and Treating Unmet Patient Needs

Because nursing home residents with dementia sometimes lose their ability to speak, they may have trouble communicating their needs to nursing staff. In addition, they frequently have multiple illnesses and a variety of symptoms that may confound nursing home staff when choosing treatment options. Researchers at University of Wisconsin-Milwaukee developed a clinical decision-making tool, the Serial Trial Intervention (STI), to help guide nurses in treating people with dementia showing signs of distress (Kovach et al., 2012).

The STI involves a sequence of steps in which the nurse first uses standardized assessments to identify potential physical and emotional causes of a patient’s discomfort. Next, the nurse attempts to alleviate discomfort with a nondrug intervention and then, if necessary, a drug. He or she then consults with other clinical staff, continues to monitor the patient, and adjusts or supplements treatment as necessary.

Two versions of the STI (a 5-step version and a 9-step version) were tested with 125 moderately to severely demented residents of 12 nursing homes in the Midwest. Both versions of the STI significantly reduced patient discomfort and agitation (comparing before and after the intervention), and the 9-step version also reduced non-dementia symptoms such as swollen joints and shortness of breath.

As the number of nursing home residents with dementia and the complexity of caring for them continue to increase, the use of decision support tools such as the STI can help improve the quality and consistency of patient care.

Patient Transitions Among Care Settings

doctor and older patientPeople with dementia often receive care in multiple settings, including the home, hospitals, and/or nursing facilities. Researchers at the Indiana University School of Medicine, Indianapolis, studied the impact of transitions in care within a group of over 4,000 community-dwelling older individuals. The study participants (average age, 72) were diagnosed with dementia or free of the disorder; all were served by an Indianapolis public health system program for medically indigent people between 2001 and 2008 (Callahan et al., 2012).

Those with dementia made an average of 2.7 transitions per person per year of follow-up, almost twice as many transitions as people free of dementia. These transitions did not conform to the one-way, downward spiral from home to nursing care to death that might be expected. Rather, among those discharged from an acute care hospital, 40 percent went home with no formal caretaking services. Approximately the same percentage were admitted to a nursing home, but even of those, 60 percent eventually returned home.

These findings suggest that care management programs for older adults with dementia will increasingly need to coordinate individual care across home, hospital, and nursing home settings. In addition, this study highlights the need to optimize patient care and communications between care providers during transitions between care settings, as they are high-risk periods for vulnerable patients.

As the number of people with dementia increases in coming years, so will the number of people with milder forms of cognitive impairment. A team led by researchers at the Indiana University Center for Aging Research, Indianapolis, compared health care use from 2002 to 2008 in a cohort of 7,130 people, age 71 and older, from the Health and Retirement Survey. The participants were diagnosed with either dementia or “cognitive impairment no dementia” (CIND), more commonly known as MCI (Clark et al., 2013). Based on the Survey, the researchers estimated that the number of mildly impaired people was 5.3 million, or 23 percent of those 71 years or older.

The researchers found that this group spent more nights in hospitals or nursing homes during the 6-year period of study than the population with dementia—71,000 hospital nights and 223,000 nursing home nights for the CIND group, versus 32,000 hospital nights and 138,000 nursing home nights for the dementia group. This difference may reflect greater survival rates among those with MCI than people with dementia.

These findings indicated that unless interventions can be found to delay the onset of cognitive impairment in the aging population, people with MCI may have an increasingly large impact on health care use and costs.

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