Health Letter, February 2013
Dementia is a devastating disorder causing serious, progressive cognitive and behavioral disabilities. In addition to its impact on the patient, dementia adversely affects the mental and physical health of the patient’s in-home caregiver — most frequently the patient’s spouse or adult child.
It also is a disorder that is difficult to treat medically. Available drug therapies for the underlying diseases that cause dementia, such as Alzheimer’s disease, offer little benefit and have potentially serious side effects. Moreover, patients suffering from the advanced stages of dementia are often prescribed dangerous medicines, such as powerful antipsychotic drugs, to control troublesome behaviors. This inappropriate prescribing has persisted despite explicit warnings on the labels of these drugs that they increase the risk of death in elderly patients with dementia.
Given the lack of safe, effective drug treatments, alternative interventions must be provided to dementia patients. A recent study suggests that a variety of nondrug, in-home therapies targeting caregivers can provide benefits to both dementia patients and their caregivers. The results offer hope for an improved quality of life with this terrible disorder.
Overview of dementia
Dementia is caused by progressive deterioration of the brain, which results in impaired cognition and memory loss. Dementia patients are unable to perform many normal daily activities, such as dressing, washing, cooking, eating and using the toilet.
Alzheimer’s disease, the most common cause of dementia among the elderly, accounts for 60 to 80 percent of all cases. Approximately 4 million people in the U.S. currently suffer from Alzheimer’s disease, and by 2050, an estimated 11 million to 16 million Americans will have it.
Other causes of dementia include vascular dementia (which is caused by multiple small strokes and is the underlying cause in 10 to 20 percent of dementia cases), frontotemporal dementia (associated with degeneration of the frontal and temporal lobes of the brain), Parkinson’s disease, Huntington’s disease and multiple sclerosis.
The signs of dementia are most often reported to a physician by a spouse or other close acquaintance of the patient. Typical signs of dementia include:
- difficulty remembering recent events;
- inability to perform complex tasks, such as balancing a checkbook;
- getting lost in familiar places;
- language problems, such as an inability to find the right word when speaking; and
- behavior changes that interfere with performance at work, daily activities and social relationships.
These symptoms have an insidious onset and progress gradually over many months to years.
In more advanced stages of dementia, patients exhibit troublesome behaviors and psychological problems, such as:
- physical aggression;
- personality clashes (arguments between patients and caregivers);
- repetitive questioning;
- resistance to help with daily activities;
- paranoia; and
- not sleeping at night.
Most dementia patients in the U.S. live at home and are cared for by a family member living with them or nearby. The behaviors and problems associated with dementia place great stress on caregivers and are associated with depression, increased burdens, and large outlays of both time and money.
In a study published in September 2012 in the American Journal of Psychiatry (AJP), researchers in Australia analyzed data from all randomized, controlled clinical trials (RCTs) testing nondrug therapies involving family caregivers of patients with dementia.
The researchers systematically searched computer databases of all English-language medical journals for relevant studies published from 1985 through July 2010. They found 23 RCTs, published between 1997 and 2010, meeting their search criteria. Using a study design known as a meta-analysis, the researchers pooled the results from the trials, which collectively included 3,279 dementia patients and their primary caregivers. (These RCTs all enrolled more than five dementia patients and their caregivers.)
The RCTs tested a wide range of interventions (see Figure 1), all of which were administered to caregivers with the goal of improving the health and well-being of the dementia patient, the caregiver or both. Many trials tested multiple interventions in combination.
The method of delivery of the interventions also varied significantly across trials and included:
- printed educational materials;
- telephone calls;
- individual sessions in the health care provider/office setting;
- group sessions in a classroom setting; and
- in-home sessions.
Many of the studies used a variety of such delivery methods, and the interventions lasted anywhere from six weeks to 24 months.
For dementia patients, the RCTs most commonly measured the frequency and severity of behavioral and psychological symptoms as rated by standardized questionnaires, typically based on the assessment of the caregiver. Four trials also measured how frequently the patients transitioned from the home care setting to an institutional care setting (e.g., assisted living facility or nursing home). For caregivers, the RCTs measured the psychological and emotional reactions (e.g., level of stress, anxiety and depression) to the dementia patients’ behavioral and psychological symptoms and quality of life, again as rated on standardized questionnaires.
For the 17 RCTs that measured outcomes in dementia patients, analysis of the pooled data revealed a significant overall beneficial effect, as evidenced by reductions in the troublesome behavioral and psychological symptoms of dementia. For the few studies that looked at the rate at which dementia patients were institutionalized, no benefit was detected. However, the number of studies assessing this outcome was too small to reliably detect an effect.
Likewise, for the 13 RCTs that measured outcomes in the caregivers, there was a significant overall improvement in measures of stress, anxiety, depression and quality of life.
Reprinted with permission from the American Journal of Psychiatry, (Copyright 2012). American Psychiatric Association.
The authors of the meta-analysis concluded that nondrug interventions targeting caregivers of dementia patients can significantly reduce the behavioral and psychological symptoms of those patients, as well as the caregivers’ negative reactions to the symptoms. They also noted that these beneficial effects are at least comparable to those achieved with antipsychotic drugs administered to dementia patients. Most importantly, unlike antipsychotics (and other drugs), the interventions used in the 23 RCTs included in their review had no adverse effects on the dementia patients or the caregivers.
In an editorial in the September 2012 AJP commenting on the meta-analysis study, Dr. Laura Gitlin, a research sociologist at the Johns Hopkins University Schools of Nursing and Medicine and an internationally recognized expert on nonpharmacologic approaches in dementia care, noted the following:
[T]he meta-analysis provides the strongest evidence to date that caregiver interventions have a twofold advantage: they reduce distress in caregivers, and they reduce behavioral symptoms in individuals with dementia. This quantitative synthesis of high-quality studies provides confirmation that helping families is an important vehicle for helping patients. As such, these interventions should be central to the clinical management of behavioral symptoms. The primary challenge remains how to widely implement and financially sustain delivery of these interventions to address the urgent need of families.
Quoting another editorial published in the Annals of Internal Medicine in 2006 that discussed the findings of one RCT funded by the National Institutes of Health and included in the AJP meta-analysis, Gitlin also stated the following:
‘If these interventions [for dementia] were drugs, it is hard to believe that they would not be on the fast track to approval. The magnitude of benefit and quality of evidence supporting these interventions considerably exceed those of currently approved pharmacologic therapies (for dementia).’ If not now, then when will these proven programs be made available to families who continue to receive suboptimal care or no treatment at all for behavioral symptoms? [The AJP] meta-analysis provides strong evidence that helping families is good news for dementia care.
Public Citizen’s Health Research Group strongly agrees with Gitlin’s viewpoint. Optimal care for patients with dementia clearly needs to involve nondrug interventions targeting the caregivers of dementia patients. Such treatment improves the health and well-being of both patient and caregiver.