A University of Birmingham report has concluded that national governments, health and social services, businesses, families and communities have to find new ways of responding to the rapidly growing number of people with dementia and of supporting the family and friends who care for them.

The University of Birmingham’s School of Social Policy, who were commissioned by Walgreens Boots Alliance, produced a policy paper on the needs of the carers of people with dementia in different societies.  Focusing on the UK, US, Norway, Australia and South Africa, the report explores the number and experience of carers with people with dementia in each setting, before moving on to review the research evidence and to identify good practice examples from interviews with leading policy makers, care-led organisations, public service leaders, voluntary organisations, businesses and academics.

Overall:

• This is a major challenge across the world, and all the signs show 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 can be 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 won’t 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 should include 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 to 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 the UK and in Norway, for example, new families receive a ‘baby box’ containing products for the baby and parenting information (sponsored by companies whose products are contained in the box). 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.

Elsewhere, the reports stresses:

• The importance of meeting the emotional and social needs of carers, alongside more tangible health and financial needs
• The need to recognise the diversity of carers and caring contexts, so that responses are tailored to individual needs and circumstances.  Pressures can be particularly intense for the so-called ‘sandwich generation’, where someone who is middle-aged may be balancing caring for a parent with dementia with raising children and maintaining paid employment
• The need to provide more and better support, without assuming that carers continuing in their caring role is necessarily a good outcome
• The need to tackle stigma and social isolation, and to challenge cultural assumptions about the nature of care (for example, that families want to provide care for each other, that care is a mainly female responsibility and that some communities ‘look after their own’ more than others)
• The overriding importance of relationships – between the carer and the person being cared for, between members of local communities, and between the family and formal services.

Siân Thomas, a Lecturer in the Department of Social Work and Social Care at the University of Birmingham and someone who co-authored the report, said:

“Dementia is one of the biggest challenges facing us across the world, regardless of geographic location.  So much of the responsibility for supporting people with dementia falls on their family and friends, and we need to do more to support these carers.  Caring can often be a positive thing – caring for someone implies caring about them – but it can also place intolerable pressures on individuals and families if they aren’t properly supported, and if they don’t get a choice whether to become a ‘carer’ or not.”

Richard Ellis, Vice President for Corporate Social Responsibility of Walgreens Boots Alliance, said:

“We’re delighted to have commissioned this report, setting out one of the key health challenges facing us as a society, seeking to improve support for carers and helping to identify radical solutions.  All of us have a role to play in making our communities better places to grow older – and the proposals set out here will help policy makers, employers, health and social services and society as a whole to reflect on what we need to do differently.

Read the full report – Glasby, J. and Thomas, S. (2019) Understanding and responding to the needs of the carers of people with dementia in the UK, the US and beyond.

For more information and interviews, please contact: Hasan Salim Patel, Communications Manager (Arts, Law and Social Sciences) on +44 (0) 121 415 8134 or contact the press office out of hours on +44 (0) 7789 921 165

The mission of the School of Social Policy at the University of Birmingham is ‘to understand the world – but also to change it’. This means generating new knowledge through high quality research, and using this as a starting point for making a practical difference in the real world (through our teaching, through professional training and CPD for managers and practitioners, through policy advice and work in front-line services, through raising public and media awareness and through working directly alongside local people and communities). In turning this mission into practice, we are proud of our many achievements, including running the UK's oldest social work training programme (dating back to 1908); providing one of the largest single honours social policy programmes in the Russell Group; the relationships we have with local and national partners in the public and voluntary sectors; and our role as part of the consortium designing and delivering award-winning senior leaders programmes on behalf of the NHS Leadership Academy. More than three quarters of our research is rated as 'world leading' or 'internationally excellent' in terms of its rigour, significance and originality.

The University of Birmingham is ranked amongst the world’s top 100 institutions. Its work brings people from across the world to Birmingham, including researchers, teachers and more than 5,000 international students from over 150 countries.

Walgreens Boots Alliance is the largest retail pharmacy, health and daily living destination across the U.S. and Europe. Walgreens Boots Alliance and the companies in which it has equity method investments together have a presence in more than 25* countries and employ more than 415,000* people. The Company is a global leader in pharmacy-led, health and wellbeing retail and, together with its equity method investments, has more than 18,500* stores in 11* countries as well as one of the largest global pharmaceutical wholesale and distribution networks, with more than 390* distribution centres delivering to more than 230,000** pharmacies, doctors, health centres and hospitals each year in more than 20* countries. In addition, Walgreens Boots Alliance is one of the world’s largest purchasers of prescription drugs and many other health and wellbeing products. The Company’s size, scale, and expertise will help us to expand the supply of, and address the rising cost of, prescription drugs in the U.S. and worldwide.

Further data on dementia and on carers

As the population ages, societies around the world are having to find new ways of responding to the rapidly growing number of people with dementia, and of providing support to the carers (family, friends and neighbours providing unpaid care) who provide the bulk of existing support.  While this is often associated with western countries, the biggest increases will be in low and middle-income countries.  This will affect everyone – national governments, health and social services, businesses, families and individuals – and all the indications are that we’re not ready for the challenges we may face.

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. Much of the increase will be in developing countries. Already 58% of people with dementia live in low and middle income countries, but by 2050 this will rise to 68%. The fastest growth in the elderly population is taking place in China, India, and their south Asian and western Pacific neighbours…

The total estimated worldwide cost of dementia is US$ 818 billion in 2015, which represents 1.09% of global GDP. By 2018, the global cost of dementia will rise above a US$ trillion. This figure includes costs attributed to informal care (unpaid care provided by family and others), direct costs of social care (provided by community care professionals, and in residential home settings) and the direct costs of medical care (the costs of treating dementia and other conditions in primary and secondary care)…. [I]f global dementia care were a country, it would be the 18th largest economy in the world. The annual costs exceed the market values of companies such as Apple (US $742 billion) and Google (US $368 billion).”

(See Alzheimer’s disease International (ADI) Dementia statistics  and ADI The global impact of dementia

In the UK: 

• 1 in 8 adults (around 6.5 million people) are carers (this will increase to 9 million by 2037)
• Carers save the economy £132 billion per year
• Over 3 million people juggle care with work, but 1 in 5 carers are forced to give up work altogether
• People providing high levels of care are twice as likely to be permanently sick or disabled
• Over 1.3 million people provide over 50 hours of care per week

In terms of dementia:

• There are 700,000 carers for the 850,000 people living with dementia in the UK
• 150,000 years were spent caring for people with dementia in 2013 or 1,340,000,000 hours
• In 2016/17, 30% of carers for people with dementia had been caring for between 5 and 10 years and 22% for over 10 years
• 60-70% of carers for people with dementia are women
• 63% of carers for people with dementia are retired while 18% are in paid work; 15% of dementia carers say they are not in work because of their caring responsibilities

Further data on the numbers of carers and the numbers of people with dementia in the US, Australia, Norway and South Africa are available in the full report.