As scientists scramble to find compounds that slow disease progression, dementia patients and their loved ones may simply crave a good night’s sleep and the ability to make it through the day. Indeed, better quality of life is what many of these families seek most, and non-pharmacologic approaches, such as one reported in this week’s JAMA, may yet offer the best hope for finding peace amid mental decline. In a randomized trial, four months of a home-based intervention helped cognitively impaired seniors manage daily tasks better and left their caregivers feeling less overwhelmed. In addition, the study found undiagnosed, treatable medical conditions in many dementia patients, suggesting the need for more frequent routine check-ups in this population.
For the past few decades, Laura Gitlin, Thomas Jefferson University, Philadelphia, Pennsylvania, and colleagues have developed and tested approaches to improving quality of life in dementia patients and caregivers, and have shown that an occupational therapy intervention can temper neuropsychiatric behaviors (Gitlin et al., 2008). The current study addresses functional decline. The researchers enrolled 237 dementia patients (average MMSE scores of ~13) with family caregivers in a randomized trial of a home-based program called COPE (Care of Persons with Dementia in their Environments). Based on home visits, clinical assessments, and interviews with patients and caregivers, occupational therapists and nurses developed a tailored plan for each family in the intervention group. The families received up to 10 sessions over four months with occupational therapists, and one visit and phone session with a nurse.
Families in the control group got three phone calls with trained staff members who used a script to identify caregiver concerns, and offered educational materials to address those issues. The staff sent the materials by mail and reviewed them in a subsequent call, but conducted no home visits, clinical assessments, or in-depth evaluations of patient deficits and capabilities. “The goal was to provide something to everybody,” Gitlin told ARF. “Providing caregiver education not only helped study retention, but also helped control for what we were testing—whether in-home training and teaching of concrete skills really makes a difference, versus just providing education.”
The scientists assessed the patients’ and caregivers’ quality of life using a number of standard tests at four and nine months. They checked, for example, how well patients could perform basic activities of daily living (ADLs), such as bathing or using the toilet, and gauged their capacity for more complex self-care such as preparing meals or managing finances. At four months, “we were able to reduce the amount of physical hands-on assistance caregivers had to provide in overall daily activities,” Gitlin said. “The person with dementia was engaging in these activities and not requiring the level of hands-on assistance that the caregiver was doing prior to the intervention.” COPE caregivers reported greater well-being and more confidence involving patients in activities and managing their behavior.
Compared to the “small to no” functional benefits reported for currently available anti-dementia drugs, “our changes have moderate effect size. They have some power to them,” Gitlin said. “COPE demonstrates that the first line of defense could be non-pharmacologic approaches involving assessment of the person with dementia and training of caregivers in how to set up the environment to allow the patient to engage in daily activities for as long as possible.”
Other programs have sprouted up to address the wide-ranging physical and cognitive needs of the elderly. One of them, Cognitive Fitness and Innovative Therapies (CFIT), opened last year in Santa Barbara, California, with an aim to identify and reduce the full slate of medical and lifestyle factors that could increase a person’s risk for AD (see ARF related news story). COPE “resembles things that we offer at CFIT, but they’re doing it in a much more systematic way. I very much applaud their study,” said Ken Kosik, executive director of the Santa Barbara nonprofit. “I think the interventions they're talking about are demonstrably successful in keeping people at home and improving quality of life for patients and caregivers.”
The COPE trial had troubling aspects, too. For instance, the researchers found undiagnosed medical conditions in some 40 percent of the COPE patients—most commonly urinary tract infections, anemia, and thyroid problems. It is unclear whether proper management of these conditions alone could have improved scores on the standardized tests of well-being. In the study, COPE patients with identified and treated medical issues had similar four-month outcomes as did COPE patients without underlying medical concerns.
Also worrisome was the fact that by nine months, COPE patients no longer differed from control patients on the standard measures of well-being that separated the groups at four months. Kosik likens the fleeting benefits to those in another study, published in this week’s Neurology, showing that cognitive stimulation initially slows brain deterioration in older people but ultimately hastens decline once dementia sets in (Wilson et al., 2010). In both cases, the intervention provides some benefit, “but later you get a more rapid decline (in the Neurology study), or at nine months the effects aren’t there anymore (in the JAMA paper),” Kosik said. “I think we’re back to one of these glass half-full, half-empty situations. We can look at the downsides. However, any little boost at all is really important.” Similarly, researchers in France reported early this year that a specific care plan did little to help AD patients (see ARF related news story).
On a more hopeful note, COPE caregivers in the current study still perceived benefits at nine months when asked more directly whether the intervention made them feel “more confident” or “made life easier,” for example. Furthermore, both COPE and control caregivers indicated they thought the intervention was “clearly explained,” was not “too much work,” and would recommend it to others.
In light of recently failed Phase 3 trials of AD compounds, “the thinking is to initiate treatment earlier and earlier,” Kosik said. “That, of course, is going to leave people who already have disease in the lurch. I welcome this study because it shows we’re not giving up on these people.”—Esther Landhuis
- Gitlin LN, Winter L, Burke J, Chernett N, Dennis MP, Hauck WW. Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study. Am J Geriatr Psychiatry. 2008 Mar;16(3):229-39. PubMed.
- Gitlin LN, Winter L, Dennis MP, Hodgson N, Hauck WW. A biobehavioral home-based intervention and the well-being of patients with dementia and their caregivers: the COPE randomized trial. JAMA. 2010 Sep 1;304(9):983-91. PubMed.