There are estimated to be 944 000 people living with dementia in the UK and it is estimated this will increase to 1 million people by 2025 (Wittenberg et al, 2019). Whilst increasing age is considered the most significant risk factor to developing dementia in later life (Livingston et al, 2020), a person can develop dementia at any age, especially where the onset is in a person under the age of 65 years (Kuruppu and Matthews, 2013). Of the total number of people living with dementia in the UK, an estimated 70 800 will have young onset dementia, where the onset of their symptoms will occur under the age of 65 years (Carter et al, 2022).
The cost of dementia care is expected to almost triple, increasing from £15.7 billion in 2019 to over £45 billion by 2040 (Wittenberg et al, 2019). Wittenberg and colleagues (2019) attributed 14% of the total cost to healthcare, 45% as social care costs, 1% as other costs. However, a staggering 40% was attributed to unpaid care—provided by families, friends and supporters of a person living with dementia.
Carers of people living with dementia
Lewis and colleagues (2014) estimated that there are in excess of 700 000 unpaid carers supporting people living with dementia. They went on to suggest that if the ratio of unpaid carers to people living with dementia was to remain the same, this number would need to increase to 1.7 million by 2050. In 2013, Newbronner and colleagues estimated that due to the rising numbers of people living with dementia, one in three people will provide unpaid care for a person living with dementia during their lifetime. Recent estimates suggest one in two of us may be affected by dementia in our lifetime, either through being diagnosed or caring for a family member or friend who receives a diagnosis (Alzheimer's Research UK (ARUK), 2023).
Given ageing demographics, demand and costs for long-term care systems across Europe will continue to r ise (Glendinning, 2018). Therefore, many countries are implementing ageing-in-place policies (Teahan et al, 2021) and strategies that promote people living with dementia living at home for as long as possible (Colombo et al, 2011; The Organization for Economic Cooperation and Development (OECD), 2016). Remaining at home is recognised as not only vital in reducing statutory care costs but is also considered to improve the quality of life for people living with dementia (Muir-Hunter et al, 2015). However, as a consequence of this drive to care for people in the community, there is an increasing need and role for unpaid carers (Teahan et al, 2021). While, in principle, the aims of such policy and strategy are worthwhile, it has conversely increased pressure on family carers and supporters as care and services have not been realised to support such aims.
Many family and unpaid carers have a long ‘career’ of caring responsibilities. A survey of adult carers in England conducted in 2016–2017 identified that 30% of unpaid carers had been caring for someone living with dementia for between 5–10 years, with over 20% doing so in excess of 10 years (NHS Digital, 2017; ARUK, 2021). The same survey found that over a third (36%) of these unpaid carers spend more than 100 hours a week caring for a person living with dementia and that over 60% were retired. A further 18% stated they were still working while another 15% said they were not due to their caring responsibilities (ARUK, 2021).
Newbronner et al (2013) found that the majority of unpaid carers of people living with dementia were in their 50's and 60's; so, they are probably trying to balance work and caring for parents or, are older spouses caring for partners. However, unpaid carers can have various relationships with the person living with dementia, such as, adult child, grandchild, niece, nephew, spouse, for example, although relationships are not always confined to familial ones.
Carers Trust (2021) define a carer as anyone who cares, unpaid, for a friend or family member who, due to illness, disability, a mental health problem or an addiction, cannot cope without their support. Many people who provide care to another do not identify themselves as a carer, instead seeing the gradually increasing care-related activities and responsibilities as part of an ongoing relationship with the person living with dementia, not as a separate or new role (Aldridge and Harrison Dening, 2022). Perhaps not surprisingly, Rand and colleagues (2019) suggested that people who choose to be carers tend to have a better quality of life during their caring career and experience less carer strain than those who feel that they are expected to care.
Impact of caring
Even though those carers who choose to care have a better quality of life and experience less carer strain, delivering care to a person living with dementia can be complex and multifaceted. Caring responsibilities can often encroach on all aspects of a person's life and can result in social isolation in addition to mental, physical and financial stressors (Lindeza et al, 2020). In many cases, family carers knowingly prioritise the health of the person living with dementia at the cost of their own health and well-being (Waligora et al, 2018).
It has been suggested that caring for someone living with dementia differs from caring for people with other illnesses and disabilities due to its complexity but also because of its progressive and unpredictable nature (Newbronner et al, 2013). The additional negative consequences of caring for someone living with dementia may be, in part, due to the emotional impact of their role, which can leave carers of people living with dementia experiencing feelings of guilt, anger, resentment, sadness and grief (Lindeza et al, 2020). Brodaty and Donkin (2009) identified multiple factors that impact on carer's well-being, such as the high level of need and support that is required, balancing other life events, managing the behavioural and psychological symptoms of dementia, family conflict, social isolation, fatigue and burnout, the impact on relationship, and the physical and mental capacity of the person to be a carer.
Carer's knowledge of dementia
Carers often feel ill-equipped to manage the complex needs of the person they care for and often assume the role with little or no understanding of dementia and its effects on both them and the person for whom they care (Bressan et al, 2020). All too often people living with dementia, their families and carers receive no or little support following the diagnosis and ‘fall through the cracks’ that exist within health and social care systems. This is due to the fragmentation of service provision and gaps in care for families affected by dementia (Aldridge, 2019; Martin et al, 2020). In addition, there are significant numbers of people who are waiting for an assessment appointment and a formal diagnosis of dementia, which has also increased during and post-COVID-19 (Hazan et al, 2023). This makes it difficult to identify those with caring responsibilities and therefore, restricts their access to appropriate services (Teahan et al, 2021). It is essential for generalist professionals, such as community nurses, to not only be aware of potential symptoms of dementia and encourage further assessment, but to also address the needs of their family carers and the supports they require (Aldridge and Harrison Dening, 2022). However, should a person with symptoms of a possible dementia decline an assessment, this does not preclude the family and carer's needs and to receive access to appropriate information and support in their own right. Carers will still be trying to adjust and cope with the changes in the person they care for and have concerns about what this means to their own lifestyle and future plans (Aldridge, 2019). However, it is important to note that, despite the challenges and demands experienced by unpaid carers of people living with dementia, many find their caring role a rewarding experience which can strengthen their emotional bonds and relationships (Aldridge, 2019).
Identifying carers
Unpaid carers can often be hidden from the attention of health and social care services for various reasons, but all will have their own needs. Dementia Action Alliance's Carers Call to Action (2014) have stated that when a diagnosis of dementia is given, it is not just to one person, but also to a spouse, partner, a child, the extended family and friends. Therefore, it is important to recognise that every time a diagnosis is made, it is life changing for many. There may be several unpaid carers providing support to one person living with dementia in your practice or locality. Some family members and carers may be supporting several people living with dementia in their family unit.
The author has already discussed that some carers do not identify themselves as being a carer, despite the care and support they provide to a family member living with dementia. They may not accept, nor recognise their caring roles as anything out of the ordinary and could have different perspectives of the changes in their roles and responsibilities and sometimes, this may be based upon their cultural beliefs and values (Liu et al, 2021). For example, evidence suggests that children from South Asian families see caring for parents as a duty in reciprocity of the care they received from their parents as children and young adults. South Asian families are often reluctant, as are carers from some other cultures, for the person living with dementia to move to a care home, even in the later stages as the dementia advances (Herat-Gunaratne et al, 2020). Cooper et al (2010) found that people from ethnic minority groups are more likely to care for family members with less formal care compared with White majority populations. However, this should not be seen as an indication that unpaid family carers from minority ethnic cultures do not experience the negative effects of caring. On the contrary, it has been suggested that some may, in fact, experience higher levels of burden, anxiety and depression than British White counterparts. This may be a consequence of the perceived cultural stigma of dementia, racism and being perceived as a migrant, of lower socio-economic status and inequality (Parveen and Oyebode, 2018). It should also not be assumed that the provision of care within the wider family is an indication that members of the family do not require care and support with their caring roles, such generalisations can lead to some unpaid family carers not being offered the services they need (Parveen et al, 2017).
Caring at a distance
Often, when people living with dementia live alone, it may be thought that there are no unpaid or family carers available to support them. However, there may be ‘non-kin’ support from, for example, friends or neighbours (Pleschberger et al, 2019), or it may be that family members provide care from a distance (Czapka and Sagbakken, 2020; Leszko and Allen, 2023). Similarly, family members caring from a distance are often of the ‘sandwich generation’; trying to care for their own children and parents simultaneously, which can cause issues with employment as they try to juggle responsibilities, causing increased stress and anxiety (Albertini et al, 2022). Some of the difficulties faced because of caring from a distance include feeling guilty about not being able to do enough; a detrimental impact on finances due to having to take time off work and engage in expensive travel, and finding the time to juggle all their responsibilities. All of this can have a negative impact on their physical and mental wellbeing. In practice, community nurses may have contact with the person living with dementia who resides in their locality and or a family member who is trying to support a relative with dementia who lives elsewhere.
What support do carers want and need?
Although each carer is a unique individual, there are consistent themes that are emergent in research that indicate what is considered helpful (Teahan et al, 2021). For many unpaid family carers, communication and information about dementia and its effects to improve their knowledge, developing coping strategies and acquiring skills which enable them to strike a balance between their own needs and the needs of the person they are caring for, are all seen as important (Bressan et al, 2020). Furthermore, it is well-documented that carers need access to appropriate, individualised support to meet their own social, health, psychological and emotional needs (Bressan et al, 2020). Given the heterogeneity of carers and the variance in the support they provide, there is no ‘one size fits all’ approach to offering support; however, enabling people to acknowledge their caring role and their own needs can be the first critical step in assisting them to access the support they may need going forward.
There are various tools available to support the assessment of a carer's needs. The Carer Support Needs Assessment Tool Intervention (CSNAT-I) enables carers to identify, express and prioritise areas where they feel they need more support (Lund et al, 2022). Initially developed to identify carer support needs in palliative care, it is now validated across other carer groups and is an intervention for supporting carers (family members/friends in an unpaid supportive role) to identify areas of need. CSNAT-I is delivered using a five-stage person-centred process of assessment and support comprising of 15 domains (broad areas of support need). From this, a needs-led conversation explores the carer's individual needs and what they feel would be helpful, enabling the delivery of tailored support (Table 1). Examples of areas covered start by asking the question of ‘do you need more support with …’ and then go onto identify needs relating to specific issues, such as understanding your relative's illness or having time for yourself.
Table 1. The five stages of the CSNAT-I process
| No. | Stages | |
|---|---|---|
| 1 | Introduce CSNAT-I | CSNAT-I is introduced to the carer, as the start of a conversation about support the carer may need, separate from the needs of the patient; the carer completes |
| 2 | Carer considers needs | The carer considers the 15 evidence-based questions and indicates whether they need more support in any of the do-mains and prioritises which of the domains are most im-portant for them |
| 3 | Assessment conversation | The assessment conversation is a needs-led with a focus on the priorities of the carer. The practitioner explores the car-er's individual support needs in each of the prioritised do-mains and what the carer would find helpful in meeting those needs |
| 4 | Shared action plan | Shared action planning documents the conversation with the carer. The carer's individual needs that have been identified and the agreed actions taken to meet those needs are rec-orded on the Carer Support Needs Assessment Tool Intervention Support Plan |
| 5 | Shared review | Needs change over time, so the support plan should be re-viewed for effectiveness and repeated at another point in time, if appropriate. |
For further information and access to the CSNAT-I tool, visit their website (CSNAT, 2022).
The Care Act 2014 helps to improve carer's independence and wellbeing. Local authorities must provide or arrange services that help prevent people developing needs for care and support or delay people deteriorating such that they would need ongoing care and support (UK Legislation, 2014). All carers have the right to an assessment under the Care Act 2014 that considers their individual needs, such as what they would like to be able to do or have support to do in their daily life. Such an assessment should lead to a support plan and may also lead to a personal budget and direct payments from the local authority to pay for any services identified as needed in the assessment (Carers UK 2023). Whilst it is the local authority that is responsible for carer assessments under the Act, community nurses are well placed to advise carers of this right and also to refer a person (with their consent) for an assessment.
Conclusion
Whether or not a person identifies themselves as a carer is not the priority. Of greater importance is that health and social care professionals recognise the contribution that unpaid carers make to supporting and caring for a person living with dementia and identify them as legitimate partners in care but also with their own needs. Each carer will have their own experiences, beliefs, values and expectations about their caring role, which reflects what needs they prioritise and see as important to them. Placing value to the family and unpaid carer role, and enabling their access to information and support, will not only supports them to look after themselves but will also impact positively on the person living with dementia. Timely recognition of their caring role and access to appropriate services and support are key to ameliorating some of the possible detrimental effects of caring for a person living with dementia. Community nurses are well placed to identify people in their practice and locality who have caring responsibilities.
Key points
- Many carers of a person living with dementia are older spouses and often provide care in excess of 100 hours a week
- Many carers do not identify themselves as a carer
- Carers often feel ill equipped in their knowledge of dementia and the needs of the person for whom they care for.
CPD reflective questions
- Do you know what resources are available to support informal family and unpaid carers of people with dementia in your area?
- Thinking of carers in your practice and locality from ethnic minority groups, what information, services and resources might be available to support their individual needs?
- Register for access to the CSNAT-I and reflect on the 15 domains and their potential use in supporting carers to identify their needs.