This proposal is subject to change as the project progresses.
Title: Resilience and wellbeing of people with Dementia in relation to perceived attitudes in rural Highland communities.
Background/Rationale
With the increasing pressures on service provision for people with dementia, there is a growing focus not only on service delivery but also on what services should look like from the point of view of the person being supported. A considerable amount of care and support is provided informally by unpaid carers and community resources. There is increasing recognition of the need to nurture and use these natural supports which include: the assets that people with dementia and carers bring and the support provided within communities. (Alzheimer Scotland 2010)
It has been recognised that disparities exist between rural and urban communities and there has been a particular focus on developing services and addressing care support needs for older people in rural areas (Blackstock et al. 2006), (Innes et al. 2011). Older people make up a greater proportion of the population in rural as opposed to urban areas which supports the need for this focus (Burnside 2012)
Resilience and wellbeing have been shown to contribute to positive outcomes for people with dementia and their carers. For example, living better for longer in their own homes with less reliance on traditional, formal support systems which are often lacking in remote locations. (Innes et al 2006), (Tommis et al 2007)
This study seeks to explore perceptions of people with dementia in relation to attitudes within their rural communities. The attitudes people with dementia perceive can influence how they feel about themselves as a person. (MacRae 2011), (Langdon et al. 2007) I am particularly interested in how these perceptions are formed. It has been suggested that people’s prior knowledge and expectations potentially amplify the stigma of dementia (Jenull et al. 2012) The views people held about dementia before they were diagnosed might affect how they feel about their condition and consequently how they expect others will behave towards them (Judge et al. 2010)
It has been long established that people with dementia are at risk of becoming socially isolated and less well connected with their local communities. (Scotland’s National Dementia Strategy 2013-2016) Findings from a study including people with dementia reported that perceived attitudes contributed more to a community being dementia friendly than environmental factors (Milton 2012), (Langdon et al. 2007) This new study will have a focus on how people with dementia feel supported or unsupported by the attitudes and behaviour they perceive amongst their communities. Findings will contribute to a growing evidence base around Dementia Friendly Communities and how they can be best developed. In particular, identifying the valuable contribution of natural support alongside traditional, in improving quality of life and wellbeing for people with dementia.
Research Questions
What are people with Dementia’s perceptions regarding attitudes in their communities?
How are these perceptions formed?
How do people affected by Dementia respond to these perceived attitudes and behaviours?
Theory/Methodology
In seeking to understand how the person with dementia perceives attitudes I will be taking a phenomenological approach. A philosophy that focuses on the experiences of the person, how they have perceived an event and interpret that, (Flood 2010) it accepts the uniqueness of an individuals lived life and how they have lived and as such is holistic.(Connelly 2010) It is particularly useful for smaller studies of up to 10 where there is the time and possibility for mining deeply alongside an individual (Connelly 2010) Open questions are encouraged as this leads to discussion with discovery of stories, experiences. Other researchers recommend phenomenology as an approach with people with dementia (Fetherstonhaugh et al. 2013)
Methods
This will be a qualitative study using semi-structured interviews involving four people living with Dementia in rural communities. Given the subjective nature of the research questions, the researcher feels only people with dementia are uniquely able to answer them (McKeown et al. 2010) Participants will be recruited through Alzheimer Scotland Dementia Cafes. A risk identified is that people who are engaging socially, talking about dementia or indeed any topic of discussion in a dementia café might bias the results as not addressing the opinions of those disinclined to socialise but this is a small scale practitioner research project with time constraints so it was an alternative to other lengthier recruitment processes which might have meant the research could not proceed.
The research questions are complex and posed directly, potentially stressful or impossible for the participant to answer, especially if there are communication difficulties. There is a sound evidence base to support the use of communication tools with people with dementia so I have chosen to use Talking Mats to support semi-structured interviews. Described as a low-tech communication tool using pictures which helps people with Dementia, and others to express views, feelings and opinions (Murphy et al. 2010) Research has shown Talking Mats has helped people with dementia to organize their thoughts, reduces distraction. (Murphy & Oliver 2013)There are two versions, physical and digital; this study will use the former. The participant is asked, “How do you feel about…?” while holding a matching picture card. This is repeated until all cards are placed on the mat. Reflections will be given regarding the completed mat and the participant has the opportunity to make alterations. Audio recordings will capture rich dialogue and completed mats photographed and retained. As a practitioner using Talking Mats in practice I have found the simple repetitive style of questioning rendered me to feel invisible and that the person with Dementia was in full control, holding the picture card in their own hands, placing it where they choose.
Analysis of the data starts with transcribing the four audio recordings. These interviews will be relaxed and conversational providing lots of rich data so transcribing will require one day for each interview. Analysis can wait until all data is collected (Wilkinson.D 2000) However some authors recommend concurrent analysis as this can highlight alterations for following interviews rendering the process flexible (Gibbs.G 2007) I plan to maintain a research journal from the outset for recording observations for this purpose. Dialogues will be read several times when I will be looking for patterns and themes to emerge, surprises, anomalies, plus categorizing and organizing as a continual process.
Findings will be shared with participants in several ways as they prefer plus SDWG, NDCAN, Alzheimer Scotland colleagues, other PROP2 research practitioners, partners in Health & Social care and key community stakeholders. The report will be available online and I am considering a twitter feed, #DementiaWisdom which will share quotes from the interviews (with permissions).
Ethical considerations
It is considered good practice to involve People with Dementia in research with outcomes that will have a positive impact on their lives or the lives of others affected by Dementia (Scottish Government 2013-2016). Fundamental to this is ensuring informed consent is obtained. Whilst this offers challenges, these are not unsurmountable. (McKeown et al. 2010) From the outset, information will be provided in clear, plain English, both verbally and written, with a full explanation given on why the research is being done. Participants will be reassured that they are free to withdraw at any time and the researcher will remain attentive at all times to the comfort of the participant. Interviews will last no longer than 60 minutes and may be shorter depending on the participant. The participant will be observed at all times for signs of tiredness, frustration or distress, being aware of the benefits of continuous consent with regards to including people with Dementia in research (Heggestad et al. 2013)
Interviews will be carried out at a time that is mutually suitable, individually in the participant’s own home or in another private venue as requested by the participant. Written consent will be sought and an agreement form will be produced for signing if the participant is able to do so – if not, then verbal agreement will be audio recorded. All data obtained will be anonymized and stored securely either in a lockable case in transit or lockable filing cabinet in the Inverness Dementia Resource Centre until it is disposed of safely. The researcher will have sole access to the data and any records held electronically will be password secured. If second interviews are required for any reason, consent will again be sought by reviewing the agreement form, clarifying they are still happy to proceed. This research proposal has received ethical approval from Alzheimer Scotland.
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