Blog: How to address health and care failings for people with dementia

The Alzheimer’s Society recently published a report that shows people with dementia have been left to “fend for themselves” in the community, because of inadequate care from the NHS and local councils.

As part of ‘Dementia Action Week’ Professor Jacqueline Parkes, dementia projects lead at the University of Northampton, blogs about how support centres, such as the University’s recently opened ‘UnityDEM’ in Northampton, are needed more than ever.

Dementia is a life-changing condition, with a potentially devastating impact upon the individual and their family. The physical, psychological, and social impact of the disease process on both the individual with a diagnosis and their family can be enormous.

We know that care and support provision for people with dementia across the UK can be patchy, Northamptonshire is no exception. Clearly there needs to be a range of strategies for people living with dementia in the community in order to improve quality of life.

A focus on the leisure and social habits and relationships during ageing and for those with a form of dementia, in particular, identify that health and wellbeing and sense of loneliness are strongly associated with a person’s leisure and social activities.

It has been suggested that a holistic approach which incorporates a healthy social life, engaging in social and leisure activities, such as playing a board game, dancing or reading, also plays a significant role.  The act of ‘doing’ is important. Fishing, knitting or a group activity, such as dancing or attending a social club, can support wellbeing in later life.

Given the increasing prevalence of all types of dementia globally in the next 30 years, but particularly in the ageing population, early diagnosis can enable individuals to develop social support networks and personal coping strategies to help them to live well with the condition longer in the community.

Against this backdrop, a community-based support intervention was developed in Northampton to support people living with the early stages of a dementia and their carers. Supported by the University of Northampton’s Changemaker initiative and co-developed with First For Wellbeing, it is called UnityDEM.

Led by myself, we will ‘pilot’ this unique innovative community-based centre, launched in March 2018.

There is currently limited integrated community-based post diagnostic support for people with dementia in Northamptonshire. Carers support groups are being delivered by third sector charity groups, but these are fragmented and difficult for carers to access.

UnityDEM Centre offers a more holistic, accessible and progressive programme within a unique urban community context that gives a message that there can still be much enjoyment in life. People with dementia and their carers or family members will be together, accessing the same support and interventions at the same time, all under one roof.

A team of staff and volunteers will provide an enjoyable, flexible and adaptive programme of holistic support and informative activities in a non-medical community venue up to three days per week.  Evidence suggests that combined and intensive community-based support ‘closer to home’ can encourage those experiencing the early stages of dementia to accept help via trusting relationships and mutual support.

Developing the UnityDEM Centre provides an excellent opportunity to build on existing community engagement models, while at the same time developing a unique and innovative model which is specifically tailored made to offer post diagnostic support and expertise to a vulnerable population in the county.

As a pilot site, the Northampton UnityDEM Centre will provide the evidence from which to develop similar community-based meeting centres in other locations across the county. Following its successful implementation and review, the team will continue to work together to disseminate and diffuse the findings, via workshops and seminars,  into other identified potential sites, working with external partners in those locations to develop their own locality centre.

This could be particularly beneficial for areas where the numbers of people being diagnosed with a dementia are likely to increase significantly over the next decade. Ultimately UnityDEM has the potential to offer community-based post-diagnostic psychosocial support more widely across the UK, as local communities seek to positively respond to the growing numbers being diagnosed with a dementia.