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Abstract
Family carers are often involved in decisions concerning the health and social care needs of people with dementia. These decisions frequently involve considering risks inherent in daily living situations and discussing these with care recipients and professionals. The purpose of this study is to understand the risks that present most concern to family carers; explore attitudes and approaches of this group towards risk; and examine how information about risks is shared between familial carers, care recipients and professionals working in dementia care. Five focus groups were held across Northern Ireland between April and July 2015 involving 22 carers. Risks of most concern were driving, falls, financial risks, getting lost and using electrical appliances. Concepts of ‘risk’ related to terms such as danger, harm and vulnerability with emphasis on consequences rather than likelihoods. The psychosocial benefits of taking risk were recognised by some participants. Discussion of risks with family members with dementia primarily involved bringing risk matters to the attention of the individual. Family carers talked with a wide range of professionals about risks. Divergences in perspectives were noted, particularly in relation to matters of health and safety. A model of risk communication is developed illustrating how this can play a key role in informed, shared decision-making where a family member has dementia, serving an important role in risk management processes in informal community dementia care.
Acknowledgements
This work was supported by the Health and Social Care Research and Development Division, Public Health Agency for Northern Ireland and Atlantic Philanthropies under Grant COM/4891/13. This support is gratefully acknowledged. Ethical approval was granted by the Office for Research Ethics Committee Northern Ireland (Ref 15NI0008). The authors would like to thank Alzheimer’s Society for their support in recruitment and co-facilitation of the focus groups, and the family carers who took time to participate in the groups and share their experiences and views.