To identify and assess the effectiveness of services or models of care for persons with dementia living in their homes, in specialised care units, or in assisted-living centres or congregate homes.

MEDLINE, CINAHL and Health were searched from 1986 to 1996. The search terms included 'long term care', 'dementia', 'Alzheimer's Disease', 'caregivers', and various terms relating to residence and service provision, e.g. 'special care unit' and 'respite', respectively. The reference lists of retrieved articles, and regional Canadian research reports known to the author, were also examined.

Study designs of evaluations included in the review

Studies were included if they incorporated a randomised controlled trial (RCT) or cohort analytic design (prospective study with a cohort or comparison group).

Specific interventions included in the review

Respite care: this referred to temporary relief for the caregiver. It is care that is provided by another person in either the patient's home, in an institution or as a community day programme.

Day programmes: the primary goals of the day programmes were to maintain each patient at his or her optimal cognitive, physical and psychosocial functioning capacities. Each day is usually structured around a variety of large group activities to provide a balanced programme that meets the needs of all patients.

Counselling: this took the form of individualised counselling, usually in conjunction with some other form of community care. Support groups were excluded from the review.

Congregate living: this referred to assisted living in patient-specific residential units. Special care units: these are units designed for specific groups of patients, e.g. dementia, which have additional and specialised resources, e.g. specifically trained, knowledgeable staff.

Participants included in the review

The participants were dementia sufferers (no diagnostic information provided), aged at least 64 years.

Outcomes assessed in the review

All studies measured either (1) quality of life outcomes for the caregivers, including measures of distress, burden, mood and satisfaction, or (2) the patients' measures of functional status, activities of daily living, medication use, social participation and mental confusion.

How were decisions on the relevance of primary studies made?

The authors do not state how the papers were selected for the review, or how many of the reviewers performed the selection.

Methodological quality was assessed using a published validity checklist for trials of effectiveness (see Other Publications of Related Interest). The validity assessment was conducted by two authors using consensus methods.

The authors do not state how the data were extracted for the review, or how many of the reviewers performed the data extraction.

Data were extracted for the following categories: reference details, setting, study design, number of participants, outcome measures, intervention, follow-up and results.

How were the studies combined?

The studies were grouped according to the type of care, then reviewed narratively.

How were differences between studies investigated?

The studies were reviewed according to the type of care being examined.

Twenty studies (n=2,763) were included: 11 RCTs (n=1,909) and 9 cohort (n=854). The number of studies, and the study designs, varied according to the type of care being examined:

there were 5 studies (n=1,031) of respite care, 4 RCTs (n=976) and 1 cohort (n=55);

there were 4 studies (n=345) of day programmes, 1 RCT (n=77) and 3 cohorts (n=268);

there were 4 RCTs (n=753) of counselling;

there were 3 cohorts (n=169) of congregate living; and

there were 4 studies (n=465) of special care units, 2 RCTs (n=103) and 2 cohorts (n=362).

There was little reduction in burden for the caregivers, although the caregivers were usually satisfied with the respite programme. Respite tended to delay institutionalisation of impaired elders where the caregivers were their adult children, whereas it encouraged institutionalisation where the caregiver was the spouse.

Day programmes tended to delay institutionalisation.

Counselling may increase the time that the patient remains in the community, and may increase the psychosocial adjustment of caregivers with poor coping skills.

Congregate living may improve the patient's behaviour and status.

The patients benefited from receiving care in special care units, as did their caregivers.

Care programmes offered benefits for both the patient and the caregiver. Different interventions or programmes may be more beneficial for certain types of caregivers and their relatives. There is a need for more research.

The review question was stated clearly and supported by the study inclusion criteria. The literature search was reasonable, though not comprehensive. The validity assessment was performed with a validated scale, but results from the assessment were presented poorly. Similarly, the details of the included studies were limited. Some details of the review methodology were missing, e.g. how many of the reviewers extracted the data.

The conclusions seemed to follow from the results presented but, given the limitations highlighted, should be treated with some caution.

Practice: The authors did not state any implications for practice.

Research: The authors state that more research is needed. First, to examine the effectiveness of care programmes. Second, to examine the effectiveness of different programmes for specific persons and their caregivers, with different characteristics at different stages of illness. In addition, research should document expenditures from all perspectives, e.g. family expenditure and programme costs.

Health Canada.

Guyatt GH, Sackett DL and Cook DJ. Users' guides to the medical literature. II. How to use an article about therapy or prevention. A. Are the results of the study valid? JAMA 1993;270:2598-2601.

This is a critical abstract of a systematic review that meets the criteria for inclusion on DARE. Each critical abstract contains a brief summary of the review methods, results and conclusions followed by a detailed critical assessment on the reliability of the review and the conclusions drawn.