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International journal of environmental research and public health
Apr 10, 2024;21 (4):

Is the Invisibility of Dementia a Super-Power or a Curse? A Reflection on the SUNshiners' Questionnaire into the Public Understanding of Dementia as an Invisible Disability: A User-Led Research Project.

Danielle Tingley, Rosalie Ashworth, Dalia Torres Sanchez, Grace Hayes Mac Mahon, Yvette Kusel, Brigitta Maria Rae, Tracey Shorthouse, Alan Bartley, Gabrielle Howell, Joanne Hurley
Author Information
  1. Danielle Tingley: SUNshiners Group, Kent and Medway Partnership Trust (NHS), Community of Mental Health for Older Adults, Folkestone Health Centre, Folkestone CT20 1JY, UK.
  2. Rosalie Ashworth: Neuroprogressive and Dementia Network, NHS Tayside, Ninewells Hospital, Dundee DD1 9SY, UK. ORCID
  3. Dalia Torres Sanchez: SUNshiners Group, Kent and Medway Partnership Trust (NHS), Community of Mental Health for Older Adults, Folkestone Health Centre, Folkestone CT20 1JY, UK.
  4. Grace Hayes Mac Mahon: SUNshiners Group, Kent and Medway Partnership Trust (NHS), Community of Mental Health for Older Adults, Folkestone Health Centre, Folkestone CT20 1JY, UK.
  5. Yvette Kusel: SUNshiners Group, Kent and Medway Partnership Trust (NHS), Community of Mental Health for Older Adults, Folkestone Health Centre, Folkestone CT20 1JY, UK.
  6. Brigitta Maria Rae: SUNshiners Group, Kent and Medway Partnership Trust (NHS), Community of Mental Health for Older Adults, Folkestone Health Centre, Folkestone CT20 1JY, UK.
  7. Tracey Shorthouse: SUNshiners Group, Kent and Medway Partnership Trust (NHS), Community of Mental Health for Older Adults, Folkestone Health Centre, Folkestone CT20 1JY, UK.
  8. Alan Bartley: SUNshiners Group, Kent and Medway Partnership Trust (NHS), Community of Mental Health for Older Adults, Folkestone Health Centre, Folkestone CT20 1JY, UK.
  9. Gabrielle Howell: SUNshiners Group, Kent and Medway Partnership Trust (NHS), Community of Mental Health for Older Adults, Folkestone Health Centre, Folkestone CT20 1JY, UK.
  10. Joanne Hurley: SUNshiners Group, Kent and Medway Partnership Trust (NHS), Community of Mental Health for Older Adults, Folkestone Health Centre, Folkestone CT20 1JY, UK.
PMID: 38673377 DOI: 10.3390/ijerph21040466

Abstract

The SUNshiners group includes people in the early stages of dementia with an interest in dementia activism and research. The group found that despite the growing awareness of invisible disabilities, there is very limited research into the pros and cons of the invisibility of dementia. Our paper explores the SUNshiners research which stemmed from varied individual experiences of disclosing diagnoses. The group designed and developed a short survey to explore what the public knew about dementia and what they thought about the invisibility of dementia. A mixture of open- and closed-ended questions were used to gain meaningful data. A total of 347 people completed the survey (315 online and 32 paper-based), which was then co-analysed. The findings suggest that the majority of the public felt that the invisibility of dementia was negative; that knowing someone had dementia when first meeting them would be beneficial; that people living with dementia should maintain the right to vote; and that people living with dementia do not automatically require a consistent, regular carer. Common themes from the open-ended answers included capacity, severity of dementia, and access to support. The findings support the disclosure of dementia diagnosis; however, more action is needed to tackle stigmatised views, particularly as the SUNshiners felt that people do not have enough dementia education to support a positive disclosure experience. They shared their experiences of the group and the project's benefits, but also the losses they have faced. Our paper aims to be as accessible as possible.

Keywords

Dementia co-production invisibility mixed methods user-led

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Grants

  1. N/A/Innovations in Dementia

MeSH Term

Humans
Dementia
Surveys and Questionnaires
Female
Male
Aged
Middle Aged
Adult
Persons with Disabilities
Aged, 80 and over
Young Adult
Health Knowledge, Attitudes, Practice
Journal Article Research Support, Non-U.S. Gov't

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