Emphasise capability, not disability: exploring public perceptions, facilitators and barriers to living well with dementia in Northern Ireland

Abstract

Background Improving public knowledge and understanding about dementia has been identified as a priority area by people living with the condition, researchers, educators, and policymakers for several years. Societies that have a better understanding of the condition are more likely to enable people living with dementia to enjoy a better quality of life. The aim of this study was to explore current public perceptions of dementia along with the facilitators and barriers to living well from the perspective of people living with the condition in Northern Ireland. Methods Four focus group interviews were conducted with a total of 20 people living with dementia across three Northern Irish Counties in June 2019. These interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Ethical approval was obtained for this study prior to data collection. Findings Following thematic analysis, three themes emerged in relation to barriers and facilitators to living well with dementia. These were: ‘Emphasis on Disability NOT Capability’, which highlighted societal misconceptions about the activities and modes of life which people with dementia could or could not do; ‘Normalise Dementia – We Don’t Want a Fool’s Pardon’, which focused on how the public could encourage people living with the condition to enjoy greater independence, and ‘Dementia isn’t a Death Sentence’, which considered how professionals, family members and friends treated the person after diagnosis. Conclusions Public perceptions about dementia have the potential to act as both facilitators and barriers to living well with dementia. People with dementia stated that they are more likely sustain wellbeing when they are valued and can maintain independence. On the contrary, poor public and professional attitudes to dementia had the potential to disempower people living with dementia.

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

“…Clemerson report that participants sought knowledge in the reappraisal process, for instance by reading about the disease [ 76 ]. Nonetheless, several studies stress that in essence they were still the same [ 68 , 71 , 94 , 105 , 107 ], for example, in one of the studies a participant expressed: “I’m still me, or at least a version of me” [ 71 ] (p. 6).…”

“…What was important for participants and what supported them in their identity are described in 31% of the studies (n = 18). The importance of remaining independent and making one’s own decisions for as long as possible has been frequently reported [ 78 , 94 , 95 , 103 , 106 , 109 ]. A comment from a participant demonstrates this: “Even if I have Alzheimer’s I want to do as I want, go to stores and do what I want” [ 95 ] (p. 913).…”

The effectiveness of a digital game to improve public perception of dementia: A pretest-posttest evaluation

“…The 'Dementia Game' (www.dementiagame.com) is digital game that challenges stereotypes and stigma around dementia. People living with dementia shared their experiences to identify themes the game would cover [12], then along with nursing students and the research team we co-designed questions and the format of the game in coproduction workshops supported by Focus Games™ (https://focusgames.com/).…”

“…In this study the content of the dementia game was determined by people living with dementia through the sharing of their personal experiences [23]. Co-design allowed their priorities of misconceptions to be directly addressed and to be disseminated through a short digital game.…”

Changing the long-term care spectrum

“…Furthermore, current studies mainly take a deficit-based approach, which ultimately may have negative consequences for functioning in residents’ daily life. It seems more promising to look beyond the disability of older people and focus on their remaining capacities, determining how gains and positive outcomes can be enabled and preserved [ 14 , 25 ]. This requires that an organisation can continuously adapt to change, and therefore possesses dynamic capabilities in their strategic approach.…”