Problem behavior is relatively common in older people in the last year of life and is not confined to nursing home residents or people suffering from dementia.

Objective: To monitor key processes and outcomes in joint health and social services community psychogeriatric teams. Design: Six month follow‐up of new referrals to 4 teams in Cambridge. Data collected from structured clinical assessment forms at baseline and interviews with keyworkers at follow‐up. Data for groups with and without dementia were compared. Setting: Two rural and two urban teams in area with relatively large long stay inpatient facility but low independent sector provision. All were routine service teams, rather than run for research purposes. Main outcome measures: The main outcome measures were survival, institutionalisation, key worker assessments of avoidable admissions, appropriateness of placement, unmet needs, carer stress and global outcome for patient and carers. Results: Rates of referral to urban teams were double rural rates. Around forty percent of the dementia group had a social worker as assessor and keyworker. The dementia group was significantly more dependent and received more informal and formal care. After six months, only 54% of the dementia group were alive and living outside institutional care, compared to 79% in the functionally ill group. Unplanned admissions to hospitals or homes were rarely judged avoidable by keyworkers. Outcomes for carers were judged poor in 15% of both groups, and 13% and 11% of carers respectively were judged to be under severe stress. Unmet needs were more common in the dementia group, and related principally to residential care and carer respite. A number of measures, including evidence of geographical inequity and identification of unmet needs, provided an important contribution to local policy development. Further work is needed on the validity of keyworker assessments of carer stress, given the findings of the carer interview sub‐study.

Objective: To monitor key processes and outcomes in joint health and social services community psychogeriatric teams, from the perspective of principal carers of people with dementia. Design: Interview with carers six months after referral of the 39 community based people with dementia. Overall 34 (87%) principal carers volunteered but 5 refused follow‐up. Setting: Two rural and two urban health and social services teams. All were routine service teams, rather than run for research purposes. District had relatively large long stay inpatient facility but low independent sector provision. Main outcome measures: Measures included avoidable admissions, crises or untoward events, unmet needs, proportion of carers experiencing severe stress assessed on the General Health Questionnaire, the carer satisfaction with service elements. Also comparison of carer and keyworker assessments of carer stress. Results: The majority of patients were female and few were under 75 years old. 93% were severely or totally impaired on the Activities of Daily Living problem score. The principal carers were mostly spouses or children, 56% being female. During the six month period from referral, keyworkers considered that there were 2 avoidable admissions and crisis or untoward events in 18 cases, the largest group being accidents (7). Carers considered needs to be met in 44% of cases. Lack of patient stimulation and carer respite, together with needs for appropriate institutional care, formed the major areas of unmet need. Fifteen of 26 (58%) carers completing the General Health Questionnaire had scores indicating the probable or definite presence of psychological distress. However, keyworker assessments of carer stress showed no correlation with GHQ scores. Fourteen of 32 (43%) considered the services received as of poor or moderate quality. Accounts of problems in arranging and using services highlighted a series of issues requiring management of policy attention. Conclusions: Carer inclusion in the monitoring of joint agency teams is feasible and leads to the identification of a range of practical problems in service configuration and delivery. Keyworker assessments of carer stress may not be valid and direct measurement may be necessary.

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