Experiences of Caring for a Person With Dementia: ‘The Solutions Are There Somewhere. I Just Don’t Know What They Are Yet.’ The Perspective of the Unpaid Carer

The report discusses the findings and methodology used to understand the experience of the 14 carers involved in this process. The methodology includes an interview process using emotional
touchpoints and photo-elicitation. This interview process was carried out by researchers from University of West of Scotland and two members of the Focus on Dementia team, with the support from 8 pillar test site project managers and a member of the Focus on Dementia team who supported transcription.

A thematic analysis of the interview data was carried out by the 2 researchers at University of West of Scotland and is centred around 4 key areas:

 Quality of life for the person being cared for
 Quality of life for the carer
 Managing the caring role
 Process

The names of people with dementia and carers have been changed within the report to protect anonymity. The use of powerful quotes in the report demonstrate the depth of emotion expressed through the interview process. People’s stories resonated with those in the literature
but there were some additional insights which were observed by the researchers. These were primarily related to perceptions by the carer about what support would help which included someone to talk to who understands; having time to just be rather than having a break outside
of the caring relationship to do ‘an activity’; knowledge and expertise from the professionals has great value; developing services that respond to what matters to the person (creating dementia friendly environments that go beyond physical alterations); the importance of knowing the people with the caring relationship and ensuring that this is explicitly acted on within the relationship; the value of explicit conversations that explore how people feel about caring; and
the enormous impact that positive feedback from professionals that they were doing a good job could have on their ability to feel positive and continue.

The analysis has captured significant outcomes that matter to unpaid carers of people with a dementia. This makes a significant additional contribution to the framework for carers developed by Cook and Miller (2012). The elaboration on the initial themes developed by Cook and Miller could be useful in future carer assessments and development of support.

The sub heading to this report ‘The solutions are there somewhere. I just don’t know what they are yet’ (a quote from carer) was chosen by the researchers as it reflects optimism on the part of many of the carers that were interviewed where they were enormously grateful for the support they did receive but felt there was more that could help them with both practical aspects of caring but more significantly with more nuanced support that comprised opportunities to talk, share and learn to enable them to gain a sense of purpose, achievement and significance in their lives.