Measuring dementia friendliness – getting the balance right

A Dementia friendly communities blog by Dr Stefanie Buckner 16/10/2018

In early October I attended the WHO International Healthy Cities conference in Belfast to present the DemCom study. Many delegates were practitioners and policy makers from cities in Europe and beyond – a great opportunity to seek feedback on the evaluation tool for Dementia Friendly Communities (DFCs) we are developing through DemCom.

Let’s look at the story of the tool so far. It has its origins in an instrument for assessing age-friendliness – how well cities are doing in enabling people to age well. While age-friendliness and dementia friendliness are related, the two are not the same (as we discussed in an earlier blog). We are therefore building on this instrument to arrive at a dementia-specific tool – one that can be used to assess how successful communities are in enabling people with dementia, and those who support them, to live well.

To identify what such a tool needs to measure and how, we are drawing on different sources:

  1. Research literature
  2. A DemCom workshop in February 2018, where policy and practice stakeholders and people with lived experience of dementia shared their views on what makes for a ‘good’ DFC
  3. Fieldwork in six DFCs in England. In two DFCs we tested a preliminary version of the tool, before applying a more advanced version in four more. This has involved interviews, focus groups and questionnaires with professionals, volunteers and people with lived experience of dementia.

By the time of the WHO conference we felt confident that the tool, was taking shape. We had identified ten thematic areas we need to collect information from if we want to assess a community’s dementia friendliness. These ten areas (also called ‘domains’) make up the tool. They include six concrete domains, and four broader ones that cut across the others. They address processes and outcomes critical to a community’s dementia friendliness:

The ten domains of a tool to assess communities’ dementia friendliness (work in progress).

We were in the process of developing a small number of sub-questions for each domain, plus a list of potential data sources.

We also proposed a scoring system that translates the information collected for all ten domains into a visual representation.

In this diagram, ‘peaks’ indicate areas of strengths and ‘troughs’ areas for further work in a DFC. This ‘at-a-glance’ overview provides information in a straightforward format. It tends to be popular with people interested in ways of assessing a community’s dementia friendliness.

But getting there is less straightforward – it involves a multi-component tool and elaborate processes.

Immediately after my presentation, a question from the Chair hit the spot. Commenting that the tool was “complex”, he asked whether any audience members would find it helpful in the context of their cities? Replies were cautious and non-committal: “maybe” and “I need more time to think about it”.

The reaction was a reminder that the tool is a lot to take in, and that this might put prospective users off. It chimed with previous feedback elsewhere: concerns about both the resources and the skills needed to collect all the data required by the tool, particularly when budgets are tight.

We had plenty of encouraging responses, too. A diverse range of stakeholders have emphasised the need for a dementia-specific evaluation tool – one that can accommodate the many dimensions of dementia friendliness and that focuses on both processes and outcomes.

But we must not ignore the reality checks we have been given. The challenge is to get the balance right: Our task is to develop a tool that is capable of capturing the complexity of DFCs, yet one that is also user-friendly.

Please see here for more information on the DEMCOM project

Further reading:
Woodward M, Arthur A, Darlington N, Buckner S, Killett A, Thurman J, Buswell M, Lafortune L, Mathie E, Mayrhofer A, Goodman C. The place for Dementia Friendly Communities in England and its relationship with epidemiological need. International Journal of Geriatric Psychiatry 2018. ONLINE LINK 


 

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