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• W1494291275 abstract "Cognitively impaired patients who live alone present ethical and clinical challenges for physicians, community nurses, social workers, and other professionals who work with older persons living outside of institutional settings. There have been few studies of this population and, thus, little empirical evidence to guide interventions and decisions about care for patients with cognitive impairments who live alone. Tierney et al.'s1 study of cognitive impaired seniors who live alone is a significant contribution to an emerging effort to develop evidence-based assessment tools and practice guidelines to aid in providing support and care for dementia patients who live alone.2–4 Consistent with the experiences of community care workers, Tierney et al. found that it is difficult to identify and engage cognitively impaired individuals in research studies. Symptoms of the illness (memory loss, impaired judgment, disorientation to time and place) can cause cognitively impaired patients to become disconnected from the healthcare system. They may forget appointments or become confused about getting to and from their physicians' offices. Most patients experience the gradual onset of symptoms long before their condition is medically diagnosed. Without someone in the home to observe and monitor changes in functional abilities, progressive decline in a patient's memory and ability for self-care can go unnoticed, until there is a major problem or crisis. These factors partially explain why it took 3 years for Tierney et al. to recruit a sample of 139 cognitively impaired older persons. It also explains why the majority of referrals to the study came from community social service agencies rather than physicians. There are other factors that make research with this population challenging. First, to obtain informed consent from subjects with cognitive impairments, recruiters have to take extra precautions to ensure that consent is valid. Typically, requiring that a family member or other significant person in the subject's life verify or validate their consent addresses this concern. This method can serve to exclude the most vulnerable and challenging patients from research studies—those without family or close social relationships.5–7 A second challenge to recruiting subjects is that potential participants sometimes refuse to participate, because of fear that involvement with professionals will result in their loss of independence, autonomy, and control. In reality, to some extent, this can be a legitimate fear. Researchers often rely on clinicians to find subjects. There is no cost-effective and reliable method available to researchers to independently identify and recruit patients who are cognitively impaired and living alone. The subjects for these studies are generally recruited from clinical caseloads of physicians, social workers, or home care providers. An early, community-based, randomized clinical study of case management interventions with noninstitutionalized older adults found that experimental group subjects (those who received the intervention) were more likely to be relocated than controls.8 They also had higher mortality rates, perhaps secondary to leaving their preferred community living environment. Clinicians who manage cognitively impaired patients sometimes have to initiate procedures for involuntary interventions, such as guardianship. These patients can lose their autonomy and independence, not because of their participation in research studies, but because they are often simultaneously receiving interventions from clinicians. Because of the progressive nature of some of the illnesses that cause cognitive impairments, at some point during the course of the illness, clinicians may recommend changes in living arrangements to ensure that the patient is safe and receives appropriate levels of care. Another challenge to conducting research with cognitively impaired subjects is that extra steps are needed to ensure that data provided by the subjects are reliable. For example, in the Tierney et al. study, participants had to have a physician and a friend or family member with at least weekly contact who agreed to provide information for the study. There are no epidemiological studies to estimate how many potential subjects these methodological procedures excluded from the sampling pool. The excluded subgroup, those without physicians or caregivers, may face greater risks than the sample recruited for the study. Despite these challenges, Tierney et al. present a carefully designed prospective study of risk factors for harm in cognitively impaired seniors who live alone. The goal of the study was to begin to identify measures that physicians can use to predict individual patients' risk for harm because of their living situation (alone) and cognitive impairment. The sample consisted of 139 patients aged 65 and older with cognitive impairments who lived alone. A relatively high threshold was set as an indicator of harm in this study. Three raters reviewed data and reached consensus on harm experienced by subjects who required emergency intervention during the study period (21.6%). Harm was defined as an incident that resulted in physical injury or loss or damage of property. The incident also had to require emergency service intervention (ambulance, emergency room, or unplanned physician visit). Additionally, the incident had to meet the criteria of being caused by self-neglect or behaviors related to disorientation. The most frequently occurring incident of harm experienced by the subjects was dehydration, due to failure to eat and drink (n=9). Surprisingly, the risk of harm due to wandering did not occur, and there was only one incident of smoke damage due to improper use of electrical appliances. The authors caution that failure to identify incidents of harm due to wandering or fire could be the result of a sample size that was too small to detect these events. Other possible explanations suggested by the authors were that the incidents of harm are rare or that the 18-month study period did not allow sufficient time to detect harm due to these causes. The predictive model examined by the study included controls for three covariates (age, education, and sex) and tested seven risk factors. The model was statistically significant. Four of the risk factors significantly associated with increased risk for harm were fewer social supports, poor performance on the Mini Mental State Examination, chronic obstructive pulmonary disease, and cerebrovascular disease. The three risk factors that were not significant in predicting harm were number of medications, a diagnosis of diabetes mellitus, and a high comorbidity score. At the end of the 18-month study period, only half of the sample (n=73) avoided a harmful event and remained in the community. The remainder experienced a harmful event (n=30), died (n=12), were in hospitals or institutions (n=18), or were not living alone because of other reasons (n=6). These dynamic changes in living arrangements over a relatively short period of time support the authors' conclusion that studies with larger samples are needed to test more-complex predictive models. Physicians and other professions have a critical need for evidenced-based assessment tools to predict their patients' risk for harm and to begin to explore strategies for reducing the incidences of harm for cognitively impaired patients who live alone. The issue is even more complex because, throughout life, individuals vary in their risk tolerance levels. Ethical treatment of patients with cognitive impairments will require consideration of individual, premorbid risk tolerance profiles and life-long values and preferences when making treatment recommendations and planning interventions." @default.
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• W1494291275 date "2004-08-16" @default.
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• W1494291275 title "Dementia Patients Who Live Alone: Research and Clinical Challenges" @default.
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• W1494291275 doi "https://doi.org/10.1111/j.1532-5415.2004.52427.x" @default.
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