Health-related quality of life as a predictor of mortality in heterogeneous samples of older adults.

BACKGROUND: Health-related quality of life (HRQoL) is associated with survival in older people with multimorbidities and disabilities. However, older people differ in their characteristics, and less is known about whether HRQoL predicts survival in heterogeneous older population samples differing in their functional, cognitive, psychological or social disabilities. The aim of this study was to explore HRQoL in heterogeneous samples of older men and women, and to explore its prognostic significance for mortality. METHODS: We analysed combined individual patient data from eight heterogeneous study samples all of which were assessed with the same methods. We used 15D, a generic, comprehensive instrument for measuring HRQoL, which provides a single index in addition to a profile. Two-year mortality was retrieved from central registers. RESULTS: Health-related quality of life measurements with 15D were available for 3153 older adults. The mean HRQoL was highest among older businessmen (0.878) and lowest among nursing home residents (0.601). 15D predicted independently and significantly the 2-year survival in the total sample [hazard ratio (HR)/SD 0.44, 95% CI 0.40-0.48)]. However, 15D did not predict mortality in samples of spousal caregivers, lonely older adults and cardiovascular patients. CONCLUSIONS: 15D captures health and disability factors associated with prognosis whereas in older populations suffering from psychological and social impairments such as caregiver burden or loneliness HRQoL may not reflect their health risks.

Affordances of the care environment for people with dementia-an assessment study.

BACKGROUND: Evidence on the importance of the physical environment for the well-being of people with dementia has been growing steadily. OBJECTIVE: This article aims to (1) introduce an assessment tool for evaluating the physical care environment for people with dementia; (2) describe the method's initial results and the subsequent feedback provided to the 10 care units; and (3) describe the follow-up results 1 year later. The goal has been to provide care workers and managers with information that affects the well-being of people with dementia and to provide this information on the care environment in the context of their own work environment. METHODS: The assessment was part of a randomized controlled intervention using nonpharmaceutical methods to decrease behavioral and psychological symptoms of people with dementia. During the half-day visits, photographs and field notes were taken, and a final assessment was carried out via the Residential Care Environment Assessment (RCEA) tool developed at the beginning of the study and based on affordance theory. Follow-up data were gathered after 12 months. RESULTS: There were several possibilities for improvements in the provision of residential care in a person-centered environment. Improvements were needed mostly in comfort and in providing opportunities for engagement, activity, and expression of identity. However, in practice, it was difficult to achieve the improvements even with an intensive intervention study. CONCLUSIONS: The authors conclude that the physical care environment involves a complex set of issues and stakeholders in which the impetus to fulfill responsibilities to carry out improvements can easily fall away.

Gender differences in dementia spousal caregiving.

The proportion of male caregivers is rapidly increasing. However, there are few large scale studies exploring gender differences in the burden or coping with caregiving. We investigated this among caregivers of patients with dementia. The study cohort consisted of 335 dyads of wife-husband couples from two studies including dementia patients and their spousal caregivers. Baseline mini-mental state examination (MMSE), clinical dementia rating scale (CDR), neuropsychiatric inventory (NPI), cornell depression scale and charlson comorbidity index (CCI) were used to describe patients with dementia, Zarit burden scale and geriatric depression scale were used to measure experienced burden and depression of caregivers. Mean age of caregivers was 78 years. There were no differences in depression, satisfaction with life, or loneliness according to caregivers' gender. Male caregivers had more comorbidities than females (CCI 1.9 versus 1.1, P < 0.001), and the wives of male caregivers had a more severe stage of dementia than husbands of female caregivers (CDR, P = 0.048; MMSE14.0 versus 17.7, P < 0.001). However, the mean Zarit burden scale was significantly lower among male than female caregivers (31.5 versus 37.5; P < 0.001). Lower education of male caregivers tended to be associated with less experienced burden. In conclusion, male caregivers of dementia experienced lower burden than female caregivers despite care recipients' more severe disease.

Family care as collaboration: effectiveness of a multicomponent support program for elderly couples with dementia. Randomized controlled intervention study.

OBJECTIVES: To determine whether community care of people with dementia can be prolonged with a 2-year multicomponent intervention program and to analyze effects of the intervention on total usage and expenses of social and healthcare services. DESIGN: Randomized controlled trial. SETTING: Community-dwelling couples with one spouse caring for the other spouse with dementia. PARTICIPANTS: Couples with dementia (N=125) were allocated at random to the intervention (n=63) or control group (n=62). INTERVENTION: Intervention couples were provided with a multicomponent intervention program with a family care coordinator, a geriatrician, support groups for caregivers, and individualized services. MEASUREMENTS: Time from enrollment to institutionalization of spouses with dementia and use of services and service expenditure of couples. RESULTS: At 1.6 years, a larger proportion in the control group than in the intervention group was in long-term institutional care (25.8% vs 11.1%, P=.03). At 2 years, the difference was no longer statistically significant. The 2-year adjusted hazard ratio for the intervention group was 0.53 (95% confidence interval (CI)=0.23-1.19, P=.12). Intervention led to reduction in use of community services and expenditures. The difference for the benefit of intervention group was -7,985 Euro (95% CI=-16,081 to -1,499, P=.03). When the intervention costs were included, the differences between the groups were not significant. CONCLUSION: Although the intervention did not result in a significant difference in the need for institutional care after 2 years, individualizing services in collaboration with families may lead to reduction in use of and expenditures on municipal services.

How do officially organized services meet the needs of elderly caregivers and their spouses with Alzheimer's disease?

The caregiving situation among caregivers and their spouses with Alzheimer's disease, the support and services received, the unmet needs, and the caregivers' satisfaction with the services are examined. The study included a survey of a random sample of 1943 caregivers of persons with Alzheimer's disease in Finland. Mean age of the caregivers was 78.2 years, and 35% had poor subjective health. Disabilities and behavioral symptoms were common among the spouses with Alzheimer's disease. The services most often offered were financial support (36%), technical devices (33%), physiotherapy (32%), and respite care in nursing homes (31%). Most often needed services were physiotherapy for the spouse with dementia (56%), financial support (50%), house-cleaning (41%), and home respite (40%). Only 39% of the caregivers were satisfied with the services, and 69% felt they did not have any influence on what services were offered. It was concluded that official services poorly meet the needs of these caregivers.

Inappropriate treatment of people with dementia in residential and day care.

Dependence on the help provided by other people increases the risk of a person being inappropriately treated. Our objective was to investigate inappropriate treatment and its context in the care of people with dementia. Some 85 clients across eight care units providing dementia care were observed by means of a structured Dementia Care Mapping method (DCM). Of the 17 DCM categories for inappropriate treatment, withholding, invalidation, and objectification were the categories coded most frequently. Inappropriate treatment episodes were mostly associated with eating and situations in which a client had a need or request. Most episodes occurred accidentally. The results show that nurses involved in dementia care need more knowledge of how illnesses causing dementia change the way the affected person experiences reality, and of the ethical aspects of their work.

Spouse caregivers' perceptions of influence of dementia on marriage.

OBJECTIVES: To investigate what kind of changes spouse caregivers of demented patients experience after the onset of dementia (a) in the general atmosphere, happiness, and relations of marriage and (b) in the sexual side of marriage. DESIGN: Semistructured telephone interviews of spouse caregivers of demented patients. SETTING: Community-living demented patients and their spouse caregivers in eastern Finland. PARTICIPANTS: The spouse caregivers of 42 demented patients recruited from a previous intervention study. MEASURES: The questionnaire covered different areas of marriage from the time before and after the onset of dementia. RESULTS: A statistically significant decline had occurred in extent of happiness (p = .012), in equal relations (p = .001), and in patients' expressions of sexual needs (p < .001) when compared the time before and after dementia. Twenty-five (60%) of the caregivers reported that the demented patient had shown at least one negative sexual behavioral change during the course of dementia. Seven male patients (24%) had shown the behavioral symptom of constantly expressing need for making love. One in 10 caregivers had experienced positive sexual behavioral changes. In one third of the patients, the expressions of tenderness towards the caregiver had increased. Dementia did not affect significantly the general atmosphere of the marriage. Out of those still in home care, at 3 years from the onset of dementia, 19 couples (46%) continued to practice intercourse, at 5 years the number was 15 couples (41%), and at 7 years it had declined to 7 couples (28%). CONCLUSIONS: Dementing illness has a major negative impact on many dimensions of marriage. However, there are also positive changes and preserved aspects of marriage. Dementia seems to have a surprisingly little impact on whether the couple continues to have intercourse when compared with the general aging population.