A marathon, not a sprint: Supporting the carers of people with dementia

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Two women sitting on a hammock

Professor Jon Glasby, Professor of Health & Social Care and Head of Social Policy and Siân Thomas, Lecturer, Social Work and Social Care
School of Social Policy, University of Birmingham

In 2019, the Alzheimer’s Society and Alzheimer’s Research UK joined forces as the London Marathon ‘charity of the year’ and to launch a ‘dementia revolution’ campaign:

As Charity of the Year for the 2019 Virgin Money London Marathon, Alzheimer’s Society and Alzheimer’s Research UK are joining forces for a special year-long campaign to make a stand against dementia. Together we can overthrow old attitudes and transform understanding of dementia. We can champion the voices of the hundreds of thousands of families affected by this cruel condition and change society’s view of dementia forever. We are the Dementia Revolution.

Linking such an important cause to something as iconic and high profile as the marathon will hopefully generate substantial funds and raise significant awareness.

Similarly, research at the University recognises that dementia needs to be better understood within society, and, more specifically, awareness needs to be raised around those who care for others with dementia. The University of Birmingham’s School of Social Policy was commissioned by Walgreens Boots Alliance to produce a policy paper on the needs of the carers of people with dementia in different societies.

According to Alzheimer’s Disease International:

Someone in the world develops dementia every 3 seconds. There were an estimated 46.8 million people worldwide living with dementia in 2015 and this number is believed to be close to 50 million people in 2017. This number will almost double every 20 years, reaching 75 million in 2030 and 131.5 million in 2050.

Focusing on the UK, US, Norway, Australia and South Africa, the report explores the number and experience of carers of people with dementia in each setting, before moving on to review the research evidence and to identify good practice examples from interviews with leading policymakers, care-led organisations, public service leaders, voluntary organisations, businesses and academics. Overall, the report concludes:

• This is a major challenge across the world, and all the signs are that different countries are not ready to face the consequences of these demographic changes;
• Everyone will have a role to play in responding to these challenges – it cannot just be the responsibility of health and social services;
• There could be advantages for businesses who can be sensitive to the needs of people with dementia and their carers – dementia affects a large group of potential customers and a large proportion of the workforce;
• Support for carers is patchy, and emotional and psychological support is often neglected;
• We need to recognise the diversity of carers and caring situations – everyone is different and a ‘one-size fits all’ approach will not work.

In response, the report calls for:

1. New research to focus not just on specific diseases, but also on the causes and nature of frailty itself. This needs the collection of clinical, biological, social and psychological data as people age in order to identify those most at risk of frailty (with dementia one of the conditions which people might develop) and target the drivers of frailty to develop new approaches to delay progression or even reverse frailty altogether.
2. Actions to help people recognise that they are ‘carers’ and to signpost existing sources of support. This needs to happen in everyday, community settings – not just in specialist health and social services. At present, too many people do not realise that the label of ‘carer’ applies for them, and so do not access support for carers.
3. Building advice and information into everyday life, so that people and families have greater scope to plan ahead. In some countries, new families receive a ‘baby box’ with products for the baby and parenting information. Mirroring this, there may be scope for what some of our participants described as “a care package” – a collection of information about the impacts of ageing (including early signs of dementia), financial planning for later life and available health and social services, which could be distributed to everyone at a particular age.

Going back to London 2019, a dementia revolution is definitely needed – and it would be wonderful if we could apply the same level of dedication, passion and perseverance shown by those training for the marathon.

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