The nature of positive post-diagnostic support as experienced by people with young onset dementia

Abstract

Objectives

Studies on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on ‘what works’ in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers.

Method

Positive examples of support were gathered between August 2017 and September 2018, via a national survey. Inductive thematic analysis was employed to explore the nature of positively experienced services provided for younger people with dementia, including analysis of what was provided by positively experienced services.

Results

Two hundred and thirty-three respondents reported 856 positive experiences of support. Data analysis yielded eight themes regarding the objectives of positive services: Specialist Advice and Information on Young Onset Dementia, Access to Age-appropriate Services, Interventions for Physical and Mental Health, Opportunities for Social Participation, Opportunities to Have a Voice, Enablement of Independence while Managing Risk, Enablement of Financial Stability, and Support Interventions for Family Relationships.

Conclusion

The study findings (a) suggest that positive services may collectively create an enabling-protective circle that supports YPD to re-establish and maintain a positive identity in the face of young onset dementia, and (b) provide a basis from which future good practice can be developed.

Keywords:

• Young onset dementia
• carers
• Alzheimer’s
• frontotemporal dementia
• service design

Acknowledgements

The research team acknowledges the support of the National Institute for Health Research Clinical Research Network (NIHR CRN). The research team would also like to thank all the members of the project Patient and Public Involvement Group and Steering Committee for their valuable advice and contribution, as well as the NHS sites, third-sector organisations and Join Dementia Research, which facilitated the recruitment of participants to the study.

Disclosure of interest

The authors report no conflict of interest.

Data availability statement

The data that support the findings of this study are not available due to containing information that could compromise the privacy of research participants.

Additional information

Funding

This work was supported by the Alzheimer’s Society under grant number 278 AS-PG-15b-034.