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Keywords:

  • carers;
  • decision making;
  • dementia care;
  • practice development;
  • qualitative methodology

Accessible summary

  • • 
    There is currently no standard provision of care for younger people with dementia and their families in the UK and there is little involvement of families in care provision and care planning.
  • • 
    Specialist services for young-onset dementia are consistently recommended in published and grey literature but continue to be overlooked in UK healthcare policy and service development.
  • • 
    Staff experience difficulty working with family relationships because they are complex and family members often have different views and opinions about the best approach to care.
  • • 
    Recommendations are made for the implementation of family-centred working in dementia care to increase the effectiveness of care for families living with a diagnosis of young-onset dementia.

Abstract

There is no standard model of specialist care for younger people with dementia (onset before the age of 65 years) and specialist service provision varies widely throughout the UK. In order to gain a clearer picture about ways in which clinical staff work with younger people with dementia, semi-structured interviews were conducted with dementia care staff working in the north-west of England. Interviews focused on exploring daily working practices and the meaning placed on clinical decision making when involving family/carers in routine practice. Content analysis generated three core themes: (1) Maintaining Separation: how clinical staff conceptualize the meaning of ‘family’ in the provision of dementia care services; (2) Providing Practical Help: the focus in care provision on assisting families with aspects of daily life such as finances, education and physical care; and (3) Acknowledging the Family Context: how staff understand and interact with family members in an attempt to initiate care, utilizing biographically informed practice. By understanding how staff view their role in providing younger people with dementia with effective, high-quality dementia care, it is anticipated that a more family-centred approach can be integrated into already established patterns of working that more holistically meet the needs of this group.