How can we improve support for people living with dementia?
This year World Alzheimer’s month has a focus on post-diagnostic support in dementia. As someone who teaches modules on post-diagnostic support in dementia at the Centre for Applied Dementia Studies and has conducted research in this area I often hear that many people experience a fragmented and uneven support provision, which is difficult to navigate. Yet access to good post-diagnostic support is vital, in order to enable people to live ‘well’ with dementia we need to provide effective support that meets people’s needs. As we wait for the release of the new National Dementia Strategy, this is an important time to consider how we can improve post-diagnostic support?
People with dementia can have multiple needs that post-diagnostic support is designed to address. The large scale IDEAL cohort study which I am a Co-Investigator on (PI Professor Linda Clare, University of Exeter) has followed a group of people with dementia and their carers (often family members or friends) to explore what factors are linked to their capability to live well. We found that many factors can influence their capability to live well. In particular we found that for both people with dementia and carers it was their psychological characteristics and psychological health that were most strongly linked to the ‘living well’ score. We have also found that over time people with dementia and their carers have different trajectories. For most people their quality of life stayed the same over time though for others their quality of life declined and in a small group improved over time. These findings highlight that people can have different experiences of dementia with diverse support needs.
In terms of support needed people will have individual definitions of what it means to live well. In our 2022 paper people with dementia spoke of the importance of an engaged and active lifestyle, positive relationships with others, and having a good living situation and lifestyle. The importance of having a supportive community around them was highlighted in another paper. In this paper we also identified that both people with dementia and their carers wanted access to appropriate dementia support services. Dementia-specific support services were a way for individuals to meet others in a similar situation to share their concerns and learn from others who would understand them and not ‘judge’ them. People also wanted more tailored services; for example, specific groups for people with young-onset dementia or specific groups for carers. There was a need for people to be signposted to services, which often feels like navigating a maze. Having local ‘enablers’ to direct people to services was one way to help with this.
It is clear that the COVID-19 pandemic has had a negative impact on people’s access to post-diagnostic support services. Although there were creative initiatives, such as moving support groups online, many services were closed and people struggled without them. For some services have not resumed after these lockdown periods. Telemedicine and the provision of online services are likely to be here to stay and these may offer greater opportunities e.g., people accessing a wider range of services or not having to travel. However, it is important to recognise that many people value having face-to-face contact.
Enabling people to live well with dementia requires the provision of effective post-diagnostic support. Living well will mean different things to different people. There needs to be a holistic approach to assessing the needs of people and identifying the factors that impact on their well-being. We also need to recognise that each person with dementia and carer is an individual who will have different support needs. This will lead to more effective and individualised support provision.
This blog was written by Dr Catherine Quinn, Associate Professor at the Centre for Applied Dementia Studies at the University of Bradford and member of the Older People with Frailty theme, Yorkshire and Humber ARC.
To learn more about the education provision at the Centre for Applied Dementia Studies see: https://www.bradford.ac.uk/dementia/courses/
21 September 2022