There are estimated to be over 670,000 people in the UK acting as the primary carers for people with dementia (Alzheimer's Society, 2012). Caring can be an overwhelming experience, bringing irreversible changes to lives and relationships. Carers must be guaranteed comprehensive support, including emotional support, assistance with day-to-day caring and access to respite and short breaks.
The costs of caring are significant. Many carers face financial hardship, often forced to give up work and pay high care bills from limited income or private savings. This is despite the fact that carers of people with dementia save the UK public purse £8 billion every year (Alzheimer's Society, 2012). Carers must be supported by a more generous disability benefits system. Recent government policy promises better services and support for carers. This must become a reality. Without formal commitments and funding for a better deal for carers, an increasing number will be unable to continue caring and pressure on the long term care system will be immense.
A carer (sometimes referred to as a family carer or caregiver) is someone who gives a substantial amount of unpaid care and support regularly to a relative, partner or friend. There are around six million carers in the United Kingdom. 1.4 million people provide unpaid care for more than 50 hours per week (NHS Survey of Carers 2009/2010; Census 2011, Office for National Statistics). Unpaid carers are a major part of the system of support for people with dementia. Alzheimer's Society estimates that there are 670,000 people in the UK acting as the primary carers for people with dementia (Alzheimer's Society, 2012).
The work of unpaid carers makes a significant contribution to the United Kingdom. Carers UK estimates that carers save the tax payer approximately £119 billion per year (Carers UK, 2011), equivalent to £2.3 billion per week. Alzheimer's Society estimates that carers for people with dementia save the UK over £8 billion per year.
Without the work of unpaid carers, the formal care system would be likely to collapse. The ongoing support from unpaid carers will be a particular issue for the care system in the future, as changing demographic patterns, shifts in family composition, labour force participation and increased geographical mobility will affect the availability of the unpaid care workforce. Within the next three to four years, the number of people needing care will outstrip the number of people able to provide unpaid care (Carers UK, 2010). The planning of formal care must take account of the contribution made by unpaid carers now.
3. The impact on carers
3.1 Wellbeing of carers
Many carers report personal satisfaction from their caring role. However unpaid caring can have a considerable impact on a carer's health and wellbeing. Depression, emotional and physical exhaustion and general poor health are common. The Princess Royal Trust for Carers (2011) found that:
- Two thirds of older carers have long term health problems or a disability themselves
- One third of older carers reported having cancelled treatment or an operation they needed due to their caring responsibilities
- Half of all older carers reported that their physical health had got worse in the last year
- More than 4 out of 10 older carers said that their mental health had deteriorated over the last year.
Caring can be an emotionally draining experience. Carers have to come to terms with irreversible and upsetting changes in their relationships, such as a child now caring for a parent. Caring can also be very lonely. Many carers report being cut off from their former social circles which brings feelings of isolation and depression.
3.2 Caring for someone with dementia
Two thirds of all people with dementia live in their own homes. Unpaid carers provide most of their support. One study found that half of all people with dementia in the community received at least 35 hours of informal care per week (Murray et al, 1999). Many carers of people with dementia are older people themselves, with physical frailty and health conditions of their own.
Changes in memory, thinking and feeling mean a person with dementia finds it increasingly difficult to cope with everyday life. Carers are needed to provide emotional support, reassurance and help with a range of tasks, such as bathing and dressing. Sleep disturbances are common in dementia and mean that caring is a 24 hour job for many carers. Carers of people with dementia may also take on many of the tasks the person with dementia used to do, such as paying the bills or cooking meals. Because dementia is a progressive condition, carers find they are required to provide increasingly intensive support as time progresses.
Research shows that carers of people with dementia experience greater strain and distress than carers of other older people (Moise, Schwarzinger and Um 2004). 52% of carers for people with dementia are not getting sufficient support to enable them to carry out their caring role. There are significant perceived repercussions of this, including impact on mental and physical health and earlier admissions to long-term care (Alzheimer's Society, 2011).
The NICE-SCIE guideline on supporting people with dementia recommends that carers have access to a range of psychological therapies, such as cognitive behavioural therapy. The Society supports this guideline and welcomes commitments to invest in developing these therapies. They must be accessible and convenient to carers of people with dementia, with the option of self-referral.
3.3 Financial impact of caring
Financial hardship is a stark reality for many carers of people with dementia. Despite carers of people with dementia saving the country £8 billion a year, many carers have to use their private savings and assets to meet the cost of caring for a relative. Research by Carers UK found that 72% of carers were worse off financially as a result of becoming carers and many struggle to make ends meet (Carers UK, 2008). The reasons cited for this include the additional costs of disability, giving up work to care, the inadequacy of disability benefits and the charges for services. Carers aged 60-64 tend to experience the most financial difficulty, often juggling work with caring responsibilities for more than one person (Princess Royal Trust for Carers, 2011).
The costs of caring are considerable. Transport bills, utility costs and care charges can all rise significantly when someone has dementia. Most of the care for people with dementia is classed as 'social care' and is therefore means tested. People with dementia can live for many years with the condition and so can be liable for thousands of pounds of care charges. Families often spend what limited assets they have to top up the care package available, leaving them with very limited resources to look after themselves in later life.
Carers also face reduced opportunities to work and earn an income. Carers in paid work often lose income and miss opportunities for promotion due to the time spent away from work on their caring commitments. A survey conducted for Carers Week 2013 found that because of their caring role:
- 60% have had a reduction in income
- 45% have given up work
- 42% have reduced their working hours
- 34% have missed out on the chance of a promotion
One of the main reasons for giving up work or reducing hours is the lack of suitable support in looking after the person they care for (Carers UK, 2012). Quality services can, and must, make a difference to carers' lives.
Reduced income can be particularly difficult for younger people with dementia and their carers who are more likely to have financial commitments, such as dependent children and mortgage repayments. As well as the loss of income, there is the associated loss of skills, pension benefits and opportunities for re-employment.
The majority of unpaid carers of family members in the UK are women (Census 2011, Office for National Statistics). This places many women in a particularly vulnerable financial situation, as they will be less able to contribute to a personal pension scheme. In addition, women tend to live longer, and as a result, are more likely to require long term care. Therefore, women are placed in a position in which they provide the majority of care, but are more likely to be impoverished at a time when they require care and support themselves.
Carers deserve much better financial support. There must be a new, more generous disability benefits system which has no age eligibility limits and recognises the impact of cognitive disability. The carers allowance should be increased so that more people are able to care. Work towards a new solution for the care and support system must address the needs of carers or it will fail. As recognised by the Dilnot Commission, fairer care funding would bring much greater peace of mind for carers, and reforms to the funding of care and support must better support the valuable contribution made by carers. Employers also play a key part in making life better for carers. It is important that there are increased requirements for employers to allow caring leave and incentives for employers to develop carer support schemes.
4. The support carers need
When carers are well-supported, they provide better care to the person they care for (Ablitt, Jones and Muers, 2009) and report better well-being outcomes themselves (Schoenmakers, 2010). Despite this, there remains limited access to carer support services, with nearly a third of carers not receiving any services (Alzheimer's Society, 2011).
4.1 Identify and support carers
Carers are entitled to an assessment of their needs. However, often carers do not have an assessment of their needs or do not have a package of support in place to deliver on assessed need, and many are not aware of their entitlement to an assessment. Alzheimer's Society (2011) Support. Stay.Save. report found that only 37% of carers report they have had an assessment and receive social services support.
Carers need clear assessment of their needs with a single point of contact to help the carer navigate the system. There also needs to be improved identification of carers to ensure that carers are assessed and can access packages of support. We welcome the recommendation made by the Dilnot Commission (2011) that carers should be supported by improved assessments which take place alongside the assessment of the person being cared for and which aim to ensure that the impact of caring on the carer is manageable and sustainable.
4.2 Treat carers as partners in care
Carers are an important resource. Carers know the person with dementia better than anyone else. Where a person with dementia has lost capacity to communicate, carers offer a valuable insight into what the person with dementia may be experiencing or communicating. Despite this, many carers told of being left out of care decisions and not included or treated as part of the care planning process, often to the detriment of the person with dementia. It is very important that carers are an integral part of the care planning process. Health professionals and carers must work together in all aspects of care and support provision. Carers must be involved in developing care plans and in decisions about the person's care and support. Ensuring carers are partners in care will deliver better quality of life for both the carer and the person with dementia.
4.3 Information and training for carers
Information about all aspects of caring help the carer and the person being cared for live with the maximum possible quality of life. Carers must have full access to information about rights and entitlements to make informed choices. Carers need to be provided with information about what dementia is and the best way of caring for a person with dementia. This can increase their confidence, decrease levels of stress and improve the care they provide for the person with dementia.
However, carers often struggle to access such information. One study found that only one-third of those surveyed were told how to care for their relative or how to cope with dementia (Audit Commission, 2000). A range of information already exists for carers of people with dementia, about dementia and about the caring role. Despite this, people report that their information needs are not met, and information is provided too late, or not at all. A failure to proactively provide people with information appears to be a significant barrier. Comprehensive information for carers is the first step in making carers a partner in care, so that they can fully participate in supporting the person with dementia. The provision of information must be a priority.
Specific training in caring can be very valuable. Becoming a carer is often a life changing experience. Many carers are unprepared for the change in roles and relationships, and do not know how best to respond to the needs of the person with dementia. People with dementia can experience a range of symptoms such as aggression, mobility and continence problems. Expert carers programmes should be developed to deliver substantial, ongoing formal training to support carers to care for as long as they are able to.
4.4 Access to peer support
Peer support is a source of valuable emotional support. Carers want to know that they are not alone and to get practical advice from others who are in the same situation. Carer support groups and cafes provide an informal environment where carers can discuss issues effecting them and seek advice and support from others who are in the same situation. These forums are especially helpful because they help carers to escape the social isolation many carers face. Carers often tell the Society that they gain huge emotional benefits from peer support. Peer support must be carefully planned and executed to ensure it provides good quality care and support.
The internet has also revolutionised people's ability to access peer support. In 2004 Alzheimer's Society launched Talking Point, an online chat forum for carers of people with dementia. This now has over 29,000 members. The key benefit of Talking Point is that it is accessible 24/7 which means that people can seek help and advice whenever it is needed. This form of communication is also particularly helpful for people who do not want to call telephone helplines.
4.5 Access to respite care and breaks
Carers can gain significant benefit from services that offer a break from caring duties. It is important that carers have regular breaks and time for their own needs. Time away from caring can help carers to regain the energy needed for caring, and without these breaks many carers would be unable to continue caring.
Respite care and breaks are short-term care arrangements that provide temporary alternatives to a person's usual care. Respite care and breaks can be used to give carers a rest or when a carer has other important commitments.
Despite the great potential to help carers, respite services are not always available or of high quality. In some areas there is no respite at all. In other areas there is only respite in emergencies. The Princess Royal Trust for Carers (2011) found that more than one third of older carers do not get breaks away from caring, and a further third get a break only once every 2 to 3 months or less. The Society hears of respite and break services that are unreliable and not appropriate for people with dementia. Many services only offer respite care in unfamiliar surroundings to the person with dementia, meaning that they return home stressed and anxious and the carer is even more exhausted by coping with the fallout.
Many carers are also anxious about accessing care services because of the costs. Some respite care can cost in excess of £500 for a week if a carer wants to take a break. Respite care must be flexible and available for a range of situations, not just at crisis point and in emergencies. Short, regular, planned breaks in people's own homes can be an effective solution, where carers can spend for example an afternoon or a night away from caring duties. This can be particularly beneficial for the person with dementia, who may well prefer to stay in familiar surroundings. The models described in the Care Services Improvement Partnership factsheet Creative models of short breaks (respite care) for people with dementia (2008) address this issue in more detail.
The Alzheimer's Society welcomes policy commitments to develop more comprehensive, widely available respite care and breaks. Respite and break services are essential to carer mental and physical health.
4.6 Care and support in the home
Current government policy emphasises enabling people to live at home for longer, delaying entry into residential care. This is consistent with what many people with dementia and their carers want, however it has implications for carers of people with dementia who may find themselves caring for longer for people with increasing support needs. This situation must be addressed if people with dementia and their carers are to live well at home.
Carers need comprehensive home support services to help them care at home. Along with quality support in day-to-day caring, support services must address the broader range of services carers may find useful. Carers report that they find great value in services that fall outside what is traditionally considered to be 'care', such as help with gardening, shopping and housework. Carers must also have access to supported housing, advice services and services that address emotional and psychological needs.
Care packages must be designed in consultation with the carer and need to be flexible and able to fit in with people's family lives and social commitments. At present, local authorities skew services to those with critical and severe needs. People with dementia and their carers often receive support only when they have reached a crisis point. This situation puts great pressure on carers and means people suffer an unacceptably low quality of life, often for an extended period. Early intervention which includes low-level support must to be prioritised in order to empower carers. Providing support packages to address these kinds of needs in people's own homes promotes independence and assists carers with caring.
Assistive technology is developing rapidly and has the potential to offer great benefits to the carers of people with dementia. Devices such as medication reminders can support carers and those who they care for to live safely and independently with dignity for as long as possible. Carers may find that with assistive technology the person with dementia needs less intensive support, which can decrease their level of stress and improve their quality of life, allowing them more time for themselves. The roll out of dementia-supportive technologies which encourage social inclusion and independence should be a policy priority. For further information read our public position statement on assistive technology.
5. The Society campaigns for:
- Carers to be supported in their role and not to be financially penalised
- Carers to receive better information and advice
- Implementation of the Dilnot proposals as a minimum, as well as a wider debate about how to improve quality, meet the level of unmet need, abolish the postcode lottery and end the dementia tax. There must also be similar action in Wales and Northern Ireland.
- Affordable high quality respite care and access to short breaks - not just for emergencies, but regular basis, planned and home-based where possible
- Peer support networks to be available to all carers of people with dementia
- Carers to be true partners in care, involved in decisions about care and also in designing the care and support that they and the person with dementia receive.
6. References and further information
Alzheimer's Society, Carer Information and Support Programme
Alzheimer's Society (2012), Dementia 2012
Alzheimer's Society (2011) Support. Stay. Save. Care and support of people with dementia in their own homes
Audit Commission (2000) Forget me not: Mental Health Services for Older People
Carers UK and University of Leeds (2011) Valuing carers
Carers UK (2012) Future Care: Growing the Care Market
Carers UK (2010) Tipping Point for Care: Time for a new social contract
Carers UK (2008) Carers in Crisis
Carers UK (2007) Real change not short change
Carers Week (2013), Prepared to care?
Commission on Funding of Care and Support (2011) Fairer Care Funding: The report of the Commission on Funding of Care and Support, chaired by Andrew Dilnot
Department of Health (2011). Carers strategy
Glasby, J., Ham, C., Littlechild, R., and McKay, S. (2010) The case for social care reform - the wider economic and social benefits, HCMS and IASS, University of Birmingham
Moise, Schwarzinger and Um (2004) Dementia care in 9 OECD countries: a comparative analysis OECD Health Working Paper no. 13, OECD: Paris
Murray et al (1999) EUROCARE: A cross-national study of co-resident spouse carers for people with Alzheimer's Disease: I factors Associated with carer burden, International Journal of Geriatric Psychiatry, 14, 651-661
NHS Information Centre (2010) Survey of Carers in Households 2009-10
Office of National Statistics, 2011 Census - unpaid care snapshot
The Princess Royal Trust for Carers (2011) Always on call, always concerned. A survey of the experiences of older carers
Yeandle, S., Bennett, C., Buckner, L., Fry, G., and Price, C., (2007) Managing Caring and Employment, CES Report
Last updated June 2013 by Alice Southern
Alzheimer's Society factsheet with guidance for carers on wellbeing, money and getting support.
Alzheimer's Society factsheet about the community care assessment process
The government's 10-year strategy for the future of carer support in England.
Visit Talking Point and take part in the discussions