Relating recovery and living well to involvement groups for people living with a diagnosis of dementia

Jocelyne Kenny

Research output: ThesisDoctoral Thesis

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Government policy has led to an increase in the diagnosis of dementia, particularly for those in the milder stages of the disease. There are calls to improve the provision of post-diagnostic psychosocial interventions to provide better cognitive, emotional and behavioural support. Involvement groups are increasingly being offered as one type of psychosocial intervention for people living with dementia. Whilst the number of involvement groups with shared aims and objectives are growing, little is known about the benefits and limitations and the processes that might facilitate these, although some reported benefits appear to relate to recovery and ideas on living well.
This grounded theory study aimed to explore and build a model of how people living with dementia experience involvement groups, and how these experiences might relate to recovery and living well. Thirteen people living with a diagnosis of a dementia were recruited from three involvement groups in London and south east England.
Data analysis resulted in a theoretical model of how involvement groups for people with dementia might relate to recovery and living well. The model was made up of 11 theoretical codes, based on 31 focused codes. The model identified a number of benefits and limitations associated with involvement groups. These were made sense of in the wider context of the losses associated with dementia and the gains associated with involvement groups. Many of the benefits of involvement groups were found to outweigh the social losses of dementia in the present and short term, whilst the progressive nature of dementia made it unlikely that gains would be sustained in the longer term.
The findings highlight important areas for clinical practice, including offering groups more widely in the context of finite resources, benefits and limitations, and managing processes within groups. Suggestions for future research are offered.  
Original languageEnglish
Awarding Institution
  • Royal Holloway, University of London
  • Theodore, Kate, Supervisor
  • Farquharson, Lorna, Supervisor
Award date1 Nov 2016
Publication statusUnpublished - 2016


  • Service users
  • user involvement

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