Situating support for people living with rarer forms of dementia

Mary Pat Sullivan; Paul M Camic; Emma Harding; Joshua Stott; Gill Windle; Emilie V Brotherhood; Adetola Grillo; Sebastian J Crutch

doi:10.1186/s12877-023-04268-4

Situating support for people living with rarer forms of dementia

BMC Geriatr. 2023 Oct 6;23(1):627. doi: 10.1186/s12877-023-04268-4.

Authors

Mary Pat Sullivan¹, Paul M Camic², Emma Harding², Joshua Stott³, Gill Windle⁴, Emilie V Brotherhood², Adetola Grillo⁵, Sebastian J Crutch²

Affiliations

¹ Faculty of Education and Professional Studies, School of Social Work, Nipissing University, North Bay, ON, Canada. marypat.sullivan@nipissingu.ca.
² Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), London, UK.
³ Department of Clinical, Educational and Health Psychology, University College London (UCL), London, UK.
⁴ Ageing and Dementia @ Bangor, Dementia Services Development Centre (DSDC), School of Medical and Health Sciences, Bangor University, Bangor, UK.
⁵ Faculty of Education and Professional Studies, School of Social Work, Nipissing University, North Bay, ON, Canada.

Abstract

Background: Awareness of a multitude of diseases that can cause neurodegenerative decline and their unique symptom profiles in the dementia care and support sectors remains limited. Obtaining an accurate diagnosis and post-diagnostic care and support is a challenge for many people and their families. As part of a larger study examining multi-component forms of support for people living with rarer dementias, the aim of this present study was to examine how rare dementia was situated within the complex social groupings, their organization and embedded discursive constructions that broadly form dementia care and support delivery.

Methods: Adopting a situational analysis approach, we undertook an examination of public documents and organizational websites within the support sector for people living with dementia in Canada, England, and Wales. We also surveyed professionals to further explore the situation at the point of care and support delivery. Consistent with our approach, data collection and analysis occurred concurrently including the development of a series of analytic maps.

Results: Recognizing the complexities within the situation, our findings provided new insights on the situated structures for support action and the discursive representations that illuminate both the limitations of the current support landscape and possibilities for a more flexible and tailored rare dementia support. Alongside, the predominant universal versus tailored support positionings within our data reinforced the complexity from which a promising new social space for people living with rarer dementias is being cultivated.

Conclusions: The social worlds engaged in supportive action with people living with rare dementia are less visible within the shadow of a universally constructed dementia support milieu and appear to be negotiated within this powerful arena. However, their evolving organization and discursive constructions point to an emerging new social space for people living with rarer conditions.

Keywords: Atypical dementia; Care; Rarer dementias; Situational analysis; Support; Young onset dementia.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Dementia* / diagnosis
Dementia* / epidemiology
Dementia* / therapy
England
Humans
Social Support
Surveys and Questionnaires
Wales