Out of sight out of mind? Support and information given to distant and near relatives of those with dementia

Objectives: Increasing attention has been paid to the needs of family members caring for a person with dementia but little has been written about the impact on the wider family. This paper was intended to see whether the need for information would stretch to those relatives living far from the patient.

Method: A case-control study comparing two sets of relatives of community-dwelling probands in contact with secondary services and having a clinical diagnosis of dementia: one set of relatives living less than an hour away and another set living further away. The reported need for and source of information obtained by relatives was questioned using a specially designed questionnaire. Mini Mental State Examination (MMSE) and Clinical Dementia Ratings Scale were used with probands.

Results: Relatives living distantly from the person with dementia reported similar rates of subjective distress but were more often dissatisfied with information received. Distant relatives were also less likely to access information from books or lay societies.

Conclusion: The impact of having a relative with dementia does not lessen with distance. The wider family need support and information as well as ‘primary carers’. If the whole family is to be supported in their caring role, then clinicians and the lay societies need to widen their supportive net. Copyright © 2002 John Wiley & Sons, Ltd.