title: Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers.
abstract: BACKGROUND
  Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored.
  
  
  METHODS
  Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts.
  
  
  RESULTS
  Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers' active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this.
  
  
  CONCLUSIONS
  Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.
authors.affiliation: Social Care Workforce Research Unit, King's College London, Strand, London WC2R 2LS, UK. kritika.1.samsi@kcl.ac.uk
authors.forename: Kritika
authors.initials: K
authors.lastname: Samsi
authors.forename: Jill
authors.initials: J
authors.lastname: Manthorpe
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D017028:Caregivers / Q000523:psychology*; D003657:Decision Making; D003704:Dementia / Q000523:psychology*; D004739:England; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008137:Longitudinal Studies; D008297:Male; D026684:Personal Autonomy; D019727:Proxy; D036301:Qualitative Research; D012189:Retrospective Studies; D014852:Wales