Activities per year
in dementia-related research. Because little is known about their personal experiences either immediately post-diagnosis or as
dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy
this omission, the author examined methodological and ethical challenges identified as part of a research study that included people
with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants
are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant
observation and an adapted narrative research method were used as part of a three-year longitudinal study to help better
understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges
were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants,
the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize
the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and
practice issues, with a call for both to be recognized and addressed in terms of future policy and practice. First is a lack of awareness
of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather
than individual preference or need. Second is the lack of information post-diagnosis about dementia being shared with people who
have Down syndrome
|Number of pages||198|
|Journal||Journal of Policy and Practice in Intellectual Disabilities|
|Publication status||Published - 1 Jun 2016|
- Down syndrome
- intellectual disabilities
FingerprintDive into the research topics of 'Investigating the Lived Experience of People with Down Syndrome with Dementia: Overcoming Methodological and Ethical Challenges'. Together they form a unique fingerprint.
- 1 Types of Public engagement and outreach - Public lecture/debate/seminar
International Summit on Intellectual Disability and Dementia with the purpose of developing a major international policy statement on a number of areas related to dementia and adults with intellectual disability, including human rights and the Convention on the Rights of Persons with Disabilities, nomenclature, advanced dementia, end-of-life care practices, aiding family caregivers, community dementia capable care practices, and advocacy for inclusion of persons with intellectual disabilty in national Alzheimer's plans.
Karen Watchman (Organiser)13 Nov 2016 → 14 Nov 2016
Activity: Other › Types of Public engagement and outreach - Public lecture/debate/seminar
Watchman, K., 11 Aug 2016, NHS Health Scotland. 53 p.
Research output: Book/Report › Commissioned report › peer-reviewOpen Access
Watchman, K., Tuffrey-Wijne, I. & Quinn, S., 2015, Pavilion Books Group Ltd. 46 p.
Research output: Book/Report › Book › peer-reviewOpen Access