Family caregiving in dementia--an analysis of the caregiver's burden and the "breaking-point" when home care becomes inadequate.

The burden of caregivers of patients suffering from of Alzheimer type dementia (DAT) and vascular dementia (VD) was analysed at the critical time, the "breaking-point", when home care becomes insufficient and/or inadequate and the caregiver burden has probably reached its upper limit. Primary family caregivers of 39 DAT and 40 VD patients who were being considered for relocation into group-living units were studied. Total caregiving burden and different aspects of the burden: general strain, isolation, disappointment, and emotional involvement, were correlated with the patients' diagnoses, abilities, and symptoms. Closer kinship to the patient imposed a heavier burden. The caregiver's gender, social class, and previous institutionalization of the patient did not influence the caregiver burden. There was no significant correlation between the patients' ADL ability or cognition and the burden. A higher level of disappointment was found among the VD carers. Different symptomatology in patients of the two diagnostic groups was related to special aspects of the burden. Multiple regression analysis showed that the amount of caregiving time each week and impaired sense of own identity, misidentifications, clinical fluctuations, and nocturnal deterioration in the patients predicted the breaking-point.

Behavioral disturbances and pharmacological treatment of patients with dementia in family caregiving: a 2-year follow-up.

Behavioral disturbances are common in dementia. Polypharmacy due to progression of disease and fluctuation of symptoms among patients might increase risk of overtreatment and/or undertreatment. Drug prescription habits were studied in relationship to symptoms of dementia after relocation of patients to group-living care units (GC). Seventy-six demented patients (mean age 81 years) were assessed before, 12 months after, and 24 months after relocation to GC. Vascular dementia was found in 47%, Alzheimer's dementia in 46%, and other dementias in 7%. Medications, regular or as required, were recorded from medication lists. Repeated observations of symptoms like depressive mood and lack of vitality were made with validated scales. Eighty percent of the patients were prescribed drugs; 40% were given neuroleptics and 9% were given antidepressants. During the 2-year follow-up, polypharmacy increased; patients with five drugs or more increased from 15% to 35%; usage of neuroleptics or sedatives, as required, increased from 8% to 25%, p < .01. Depressive mood was noted in 86% after 2 years and 74% showed aggressiveness and anxiety, but only 12% of the patients with depressive symptoms were on antidepressants. Analgesics were prescribed to 26% of patients. In conclusion, a high proportion of patients with dementia had depressive mood and undertreatment of depressive disorder might be suspected. Polypharmacy increased during the 2-year follow-up; this finding calls for careful monitoring of adverse drug reactions, because of the deteriorating cognitive function of these patients.

Family caregiving in dementia: prediction of caregiver burden 12 months after relocation to group-living care.

The strain of caregiving associated with the care of demented persons living at home often continues after relocation and group-living care units (GL), designed for a small number of subjects, have been developed. The aim was to prospectively describe caregiver burden in relationship to symptoms of patients with dementia after relocation to GL. Sixty-four caregivers and 64 demented patients were assessed before, 6 months after, and 12 months after relocation. Thirty-six caregivers were children, 7 were spouses, and 21 were others. Validated scales were used for caregiver burden and dementia symptoms. Total burden of caregivers decreased after 12 months, but the degree of isolation was unchanged and feeling of disappointment increased significantly. The burden was not related to changes of activities of daily life or disorientation. Patients' lack of vitality at relocation independently predicted caregiver's burden 1 year later. Hallucinations and changes of symptoms during the first year associated with less caregiver burden, probably due to greater detachment of the relationship. The caregiver burden remains 1 year after relocation and any support to the caregiver should consider patients' symptoms, especially lack of vitality.

Group-living care: an alternative for the demented elderly.

Group-living (GL) care as an alternative to traditional long-term care for elderly demented people is rapidly proliferating across Sweden. In engineering the psychosocial and physical environment according to the competence and needs of moderately and moderately to severely demented patients, therapeutic effects on symptoms can be achieved during a period of the dementing process. The background, implementation and outcome of a concept of GL care developed for patients suffering from dementia of Alzheimer type (DAT), vascular dementia (VD) and mixed DAT and VD is presented as is the role of GL in the total dementia care of a community.

How should a group living unit for demented elderly be designed to decrease psychiatric symptoms?

The main objectives were to study relationships between the design of group living (GL) units and psychiatric symptoms in demented patients before, 6 months after, and 1 year after admission to GL units. The study population comprised 105 demented elderly (83 +/- 6 years), 37% with dementia of Alzheimer's type and 58% with vascular dementia. The patients were relocated by the municipal care planning team after clinical examination. An observational scale (the Organic Brain Syndrome scale) was used to assess confusional symptoms and disorientation. The physical environment was assessed by an architect using the Therapeutic Environment Screening Scale, which evaluates general design, space, lighting, noise, communication area, floor plan, and related factors. Less than 15% of the patients had no signs of dyspraxia, hallucinosis, dysphasia, or depression at admission, whereas 66% or more reported lack of vitality, aggressiveness, or restlessness. Fourteen out of 18 units had a corridor-like design (group A), one unit an L-shaped design (group B), and the others a square or H-shaped design (group C). Patients living in the B unit had less disorientation than the others at the 6-month follow-up. After 1 year, the patients in the A units had more dyspraxia, lack of vitality, and disorientation of identity. The communication areas in the units were negatively associated with "disorientation for recent memory" and "lack of vitality," adjusted for type of dementia (r = -0.13 to -0.16). The size of the activity area, indoor public rooms in square meters, was not correlated to confusional reactions and disorientation. In conclusion, a GL unit design that facilitates perception without reducing the communication area is to be preferred.

Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale.

OBJECTIVE: To assess burden of caregivers to stroke patients three year after primary stroke and to test validity and reliability of a novel caregiver burden scale (CB scale). DESIGN: A longitudinal community-based 3-year follow-up study of 35 consecutive primary stoke patients initially admitted to an Acute Medical Unit (mean age 82 yr). The validity of the CB scale was studied in 150 patients (mean age 77 yr): 83 demented outpatients with stroke from a general geriatric day-care unit. Reliability was studied in another 23 outpatients (mean age 72 yr) with stroke from the same unit. METHODS: A 22-item CB scale for different types of caregiver burden and scales for neuroticism and extroversion (Eysenck Personality Inventory) and quality of life (11-item scale). Activities of daily life were assessed by a 6-item, scale, initially and 3 years later. OUTCOME MEASURE: Reliability and validity of the CB scale. Improvements of activities of daily life of stroke patients. RESULTS: Factor analyses of the CB scale gave five indices--general strain, isolation, disappointment, emotional involvement, and environment--having good kappa values, .89 to 1.00 and Cronbach's alpha, .70 to .87, except for environment. A higher burden was related to a closer relationship but not to the living situation. The highest caregiver burden was found among patients showing the greatest improvements of ADL, when divided into tertiles. The patient's degree of extroversion and quality of life were negatively correlated to caregiver burden, -.46(p < .05) and .59(p < .01). CONCLUSIONS: The CB scale proved to be a valid and reliable instrument to assess caregiver burden. To improve the caregiver situation, individual patient personality characteristics, like extroversion, feeling of quality of life, and progression of the disease, must be considered.

A dynamic long-term care system for the demented elderly.

The dynamic processes and the way they interact in shaping a care system for demented patients are analyzed and discussed. The development of disability/dependency, interpreted in a simulation model based on Katz's index of ADL and Berger's scale "Rating the severity of senility," gave insight into the interplay of four care levels: psychogeriatric long-term care for patients with severe behavioral disturbances, nursing-home care for patients with highly reduced ADL capacity who are often moderately to severely demented, group-living care for the demented with less dominating ADL dependency, and residential care for the elderly frail with or without symptoms of dementia. For each facility in this chain of care, characteristics in patients' symptomatology and behavior could also be identified. Resources necessary in order to fulfill goals in caring differed between each facility.

Staff attitudes and job satisfaction in the care of demented elderly people: group living compared with long-term care institutions.

The present study is one part of a study evaluating group living (GL) care for demented elderly people in comparison with traditional institutional (TI) care. The present report concentrates on personal and work-related effects on staff. A staff training programme has been implemented, including relevant gerontological knowledge, principles of the new care concept, support and supervision. Effects are evaluated by staff interviews, observation and staff turnover rates. Results show increased knowledge and new emotional and social attitudes, resulting in higher competence and professional conduct towards patients as well as increased motivation, job satisfaction and quality of work for GL staff but not for TI staff. Group living is now a rapidly developing form of care in Sweden.

An attempt to determine the impact of group living care in comparison to traditional long-term care on demented elderly patients.

Group living (GL) care for demented elderly is an established model of care in Sweden. This study analyzes the outcome of care in terms of time of GL care, survival and care load for demented patients when extended home care no longer is considered sufficient. Twenty-eight patients, mean age 83 years, suffering from dementia of Alzheimer type or vascular dementia and previously institutionalized, were relocated from long-term care wards into GL units. These patients were compared to a matched sample of patients remaining in traditional institutional (TI) care. No difference in survival was observed between the two groups after three years, nor between length of stay in GL for the different diagnostic groups. However, in patients in GL, symptoms of dementia and functional decline were less prominent than in TI. This was most marked after six months when some improvements in the GL group were registered. The more positive outcome in GL patients abates with time due to the natural course of the diseases. After three years, the two patient groups showed a similar pattern of global deterioration with a tendency toward less care load in the GL group. Offering GL care as an alternative to TI might raise the quality of life in the demented elderly for a period of 2-2.5 years.

Development and consequences of group living in Sweden. A new mode of care for the demented elderly.

The process of developing a new mode of care for the demented elderly, group living (GL), is evaluated and the consequences discussed. The increasing proportion of very old persons in Sweden means a higher prevalence of dementia. The majority of patients in traditional institutional long term care show cognitive deterioration. An insufficient caring situation, both in quantity and quality has long been observed. This, and a better knowledge and understanding of dementing diseases, their symptoms and consequences, has been the impetus to develop an alternative care model, group living (GL), for well defined groups of demented elderly. The concept of GL discussed here means a setting strictly adapted to the abilities and psychosocial needs of moderately diseased Alzheimer and vascular demented patients. Security, integrity promoting therapy and activation are specially stressed. The importance of informing and educating different kinds of actors simultaneously to structural changes in social and physical patterns within the implementation of the new concept is illustrated.