Living alone in Alzheimer's Disease – the influence of functional impairment

Abstract

Background: A large number of individuals with Alzheimer’s disease (AD) live alone and receive little or no help from family members, which implies an additional pressure on the increasing societal costs of dementia care. Their adult children, if any, might have very limited ability to assist by providing informal help because of social structural changes, such as full-time work for most women and sometimes a place of residence located far away from the parents’ home. About half of the informal help received has been reported to consist of surveillance, diversion from repetitive or dangerous activities, and management of behavioral disturbances. Lack of help in monitoring these expressions of AD might lead to safety issues for individuals who live alone. Moreover, difficulties in detecting increasing impairments in their cognitive and functional abilities could affect negatively the opportunities of solitary-living individuals to receive necessary formal help. Living alone with dementia is also a strong factor for nursing home placement. This study aimed to describe the cognitive and functional abilities of solitary-living AD patients, as well as the potential predictors of usage of community-based home help services (HHS). Methods: The Swedish Alzheimer Treatment Study (SATS) is a prospective, open, nonrandomized, multicenter study that was undertaken the investigation of the long-term effectiveness of cholinesterase inhibitor (ChEI) treatment from various perspectives, such as cognition, activities of daily living (ADL), and usage of community-based services. Among the 1,258 outpatients with a clinical diagnosis of probable or possible AD in the SATS, 1,021 had mild-to-moderate AD (Mini-Mental State Examination (MMSE) score, 10–26) at the start of ChEI therapy (baseline). Three hundred fifty-five (35%) of these individuals were living alone at the baseline, with or without HHS, and were included in the current study. Patients were assessed regarding cognitive ability (MMSE), functional capacity (Instrumental Activities of Daily Living (IADL) scale and Physical Self-Maintenance Scale (PSMS)), and the amount of HHS (hours/week), at baseline and every 6 months for a total period of 3 years. Binary logistic regression was used to determine the individuals’ characteristics that affected the use of HHS at baseline. The following potential predictors were investigated: gender, APOE 4 carrier status, years of education, illness duration, age, number of medications, and cognitive and functional abilities at baseline. Results: At the start of ChEI therapy, 267 (75%) of the solitary-living patients were in the mild stage of AD (MMSE score, 20–26). HHS was used by 85 (32%) of the mild and 48 (55%) of the moderate (MMSE, 10–19) AD patients (P < 0.001). The mean hours of HHS used per week was 5.7 (95% confidence interval (CI), 5.0–6.5); no difference in this parameter was detected among the disease stages. The IADL capacity was already markedly impaired at baseline: 50–65% of the individuals were dependent on assistance to perform these activities (IADL score, 2–5). Regarding basic ADL, most patients were able to manage themselves independently, with the exception of physical ambulation (almost 60% of individuals needed some assistance; PSMS score, 2–5). A significant difference in mean IADL score at the start of ChEI treatment was observed between the mild and moderate AD patients: 14.6 points (95% CI, 13.9–15.2) vs 19.2 points (95% CI, 18.1–20.3; P < 0.001). The corresponding PSMS scores were 7.5 points (95% CI, 7.2–7.7) vs 8.9 points (95% CI, 8.2–9.6; P < 0.001). No difference in age or number of medications at baseline was found among the disease stages. In a logistic regression model, the variables IADL score (OR, 1.27; 95% CI, 1.17–1.38; P < 0.001) and number of medications at baseline (OR, 1.19; 95% CI, 1.07–1.33; P = 0.002) correctly classified 80.2% of the patients with AD regarding whether they used HHS at the start of ChEI therapy. After 3 years of ChEI treatment, 89 AD patients (25%) were still living alone in their own home. Of those, 65 individuals used a mean of 9.5 hours (95% CI, 7.8–11.3) of HHS per week. The cognitive ability of the solitary-living patients varied appreciably, but 80–90% could not carry out IADL tasks independently. In addition, more than 50% of the individuals needed assistance in performing the basic ADL items of grooming and physical ambulation. Conclusions: A substantial number of AD patients, predominantly females, with severe cognitive and functional impairments live alone, which might lead to safety risks for these vulnerable individuals. The amount of HHS used did not reflect disease severity. Functional, but not cognitive, ability predicted the need for home help, suggesting that HHS meets the needs related to cognitive deterioration to a lesser extent. Increased knowledge about how community-based services can better accommodate the care needs of recipients with cognitive impairment is essential. (Less)