Defining "early dementia" and monitoring intervention: what measures are useful in family caregiving?

Measures of cognition are often used to define and measure the progress of dementia and outcomes of intervention. This paper examines whether measures of psychosocial disability used with those of cognition are more useful than measures of cognition alone, particularly in early dementia. A measure of cognition and two instruments of caregiver burden, used as routine clinical outcome measures of three types of Old Age Psychiatry dementia services, were examined. All cases with dementia in a memory clinic (MC; n = 149), a community mental health service for older people (CMHT; n = 120) and a specialist dementia day hospital (DH; n = 118), in one NHS district were followed up at 12 months. Measures of cognition (MMSE), behaviour, caregiver coping (Problem Checklist; PC) and caregiver mood (Hospital Anxiety and Depression Scale; HAD) were taken at baseline (MC, n = 48; CMHT, n = 113; DH, n = 55) and at follow-up (MC, n = 35; CMHT, n = 34; DH, n = 23). At baseline, all three groups had an average MMSE score of "mild impairment" but measures of behaviour and caregiver burden showed subtle between-group differences. At the 12-month follow-up, cognition remained stable in all groups, but the frequency of day-to-day problems increased and caregiver mood deteriorated in families receiving DH support. The use of psychosocial measures of disability in conjunction with those of cognition, are important in the definition and longitudinal measurement of intervention and support in early dementia.