The Views of Adults with Dementia Towards Managing Future Health Care Risks.

Dementia is a degenerative disease which affects an individual’s thoughts, memories and behaviours.   Survival times differ with those diagnosed in their 60s in the UK living 6.7 years on average.  During this time individuals are likely to require substantial amounts of care.  It is well established within adult care policy that individuals should be able to choose the type of care that they receive.  Whilst this principle extends to dementia care, there is the added complication about what should happen should an individual lose mental capacity.  The government has implemented a range of policies to enable individuals to make decisions about their future care whilst they retain mental capacity.  These policies are being promoted on the basis that they allow greater choice.  This reflects an emphasis on choice within adult care more generally, which has recently been extended to end of life decisions.  Whilst choice is presented as a positive outcome in policy, such policies require individuals to take responsibility for managing future welfare risks.  It is therefore important to establish how people with dementia believe their condition may affect them in the future and how they manage risk and uncertainty.  Drawing on published research, the paper argues that people with dementia do not necessarily respond to appeals to manage risks in rational ways.  The paper argues that people with dementia adopt a number of strategies.  A substantial group take steps to avoid confronting risk decisions altogether.  Other people with dementia adopt formal or informal approaches to risk taking.  Those adopting formal approaches make use of legal and policy networks, whilst those acting informally rely on social contracts with friends and family members.  The paper considers implications for future policy research.