The National Dementia Declaration (Alzheimer’s Society, 2012) highlights that people living with dementia would like to have more personal choice, influence and control of decisions about managing and living with dementia. A significant challenge in achieving this is that people with dementia are often seen as passive recipients of care, perceived to be incapable of undertaking self-management of their condition due to cognitive impairment. The gradual erosion of power that happens to many people throughout their journey of being diagnosed and living with dementia means we need to create more equal relationships. We can do this through more meaningful engagement.

How do people living with dementia experience this erosion of power?

Diagnosing dementia is complex; memory problems are often the cue to action in seeking help and diagnosis can often take many months. This can be a very disempowering time: people often experience changes in their relationships, their ability to have control over their day-to-day lives, and how they make decisions about their health and wellbeing.

People living with dementia often describe the gradual process of realising that there is something wrong, and feeling increasingly anxious about forgetfulness and struggling to follow conversations or find words. Interacting with friends and family can also be frustrating and this can result in a gradual loss of self-identity and erosion of confidence. Many people are uncertain about the future, how the condition will progress and what this means for them. A common theme that emerges during the slow unfolding of their dementia is that they can feel ‘invisible’ - especially if medical professionals, family or friends start to talk over or around them.

“Why don’t you talk to ME, I’m still here you know!”

On the other hand, a dementia diagnosis can be empowering in itself as it enables people to plan for the future. In some cases people experience a renewed appreciation for life and a determination to live well with dementia, including keeping fit and healthy, maintaining social contact and making a positive contribution to family and community life.

The roles of relatives and professionals

Often it is a repeating pattern or a significant event that leads to seeking advice from a health professional. For most people a family member or friend will prompt this.

“An accurate diagnosis is essential for accessing the right care and treatment and never more so than for someone with possible dementia. The importance of a person’s experience of their symptoms is vital in understanding how best they can be supported to live well, but for accuracy of a diagnosis it is often necessary to have the help of a relative or friend to triangulate and understand issues which the person themselves may have limited insight or awareness of. This can feel disempowering for a person who has a more advanced presentation unless handled sensitively and with respect”. Dr Laura Hill, Clinical Chair Crawley CCG

The way in which health professionals approach consultations can have a major impact on the balance of power. Having empathy and being able to communicate effectively are particularly important.

“It’s hard enough to cope with growing old, when it becomes a challenge to do even the simplest things. But what makes it so much harder is when the people who are trying to help forget rule one: first connect with the person! Being curious about the power differentials in any relationship, especially a professional one, is the first step in connecting well”. Danny Chesterman, Independent Action Researcher

The majority of people living with dementia highlight the importance of family and friends in supporting them in the journey of dementia diagnosis and express a desire to remain connected to people in the future. But there is also a concern that family members can be overprotective, with the unintended consequence of disempowering the person they are trying to help. Small changes, such as taking over day-to-day tasks like cooking a meal, can result in the gradual loss of autonomy and independence if people still feel capable of doing tasks that they had done all their lives.

“I don’t very often sit and think ‘oh I can’t do this anymore’ - I don’t feel like that. But it’s difficult, it’s like ‘poor old George he does all the cooking and all that’ . . . he’s taken that away from me, he shouldn’t have taken that away from me”. Participant in recent consultation in Crawley.

What could be done about it?

A significant factor causing the erosion of power for people living with dementia is the lack of awareness and understanding of the condition in society that often results in misconceptions and stigma. In recent years much work has been undertaken to change perceptions. The successful Alzheimer’s Society Dementia Friends programme has helped over 2.4 million people to learn more about dementia and how they can help people to live well with dementia.

Dementia-friendly communities are social movements that create good health and wellbeing by having a shared purpose to help people with dementia to live well. These programmes are now supported by over 350 dementia action alliances throughout the country that inspire public, private and voluntary sector organisations to work with communities in creating supportive environments, relationships and networks for people living with dementia.

“We need to recognise that dementia is everyone’s business as it touches everyone in one way or another. It is essential that we work together and that the statutory bodies hold real value in the work of dementia-friendly communities to ensure that everyone has equal access to services. Most importantly we need to include the voice of people living with dementia in all the work that we do”. Julie Kalsi, Crawley Dementia Alliance

A wonderful example of a dementia-friendly community in action is the annual Christmas carol concert at St. Margaret’s Church in Ifield, Crawley, which is organised by The Alzheimer’s Society’s Crawley Forward Thinking Group (a group of people affected by dementia). The group and their families take responsibility for planning the event, read the lessons and invite guests. Over 170 people attended last year’s event.

“A lot of hard work has gone into organising the Christmas carol concert by these inspirational people with dementia. For the fourth year running they have produced and directed something which not only helps raise awareness of dementia in the town, but also shows that life doesn’t stop when dementia begins.” Tim Wilkins, Alzheimer’s Society

More new approaches to empower people living with dementia are emerging. For example, NHS Coastal West Sussex recently worked with the voluntary sector to shape a proposal around dementia and social prescribing.

“We believe that this has to be about working systemically and locally, with the voluntary sector, health and councils, to develop, mobilise and connect the wealth of community resources – in two ways. The first is about how those living with dementia are meaningfully connected into services, activities and community groups to help them live as well as they possibly can in their communities. The second is about how local places can build their capacity and capabilities, to empathise and be watchful for those that might need help in communities - i.e. the eyes and ears of local shops, hairdressers, chiropodists, pharmacists etc.” Tina Favier, NHS Coastal West Sussex

A call to action

Significant progress has been made in recent years to help people to live well with dementia. We now need to build on this by creating a call to action: organisations and communities must work together to create health empowerment through meaningful engagement, and help people living with dementia to take charge of their health and wellbeing.

Malcolm Bray is Founder and Director of the Health and Wellbeing Connection, a consultancy that supports health services to develop successful partnerships with communities. In recent years he has provided leadership in developing the West Sussex Wellbeing Hubs, creating the Crawley Dementia Alliance and the award-winning Dementia Friendly Crawley Programme.