DEMENTIA CARERS COUNT – WRITTEN EVIDENCE (ASC0095)

1. About Dementia Carers Count

1.1 Dementia Carers Count is a national charity, offering a wide range of free services that give family carers the opportunity to learn and understand more about dementia and to connect with others in a similar situation. We offer practical advice on the reality and challenges of being a carer. Our services, courses and information, designed and delivered by experienced health and care professionals, help carers develop skills, build confidence, and look after themselves while navigating the highs and lows of caring for someone with dementia. We believe Dementia Carers Count – we’re here to help family carers, wherever they are and whenever they need us.

1.2 For more information about this submission please contact: helen.pyper@dementiacarers.org.uk

2. Introduction

2.1 It is widely recognised that family members provide the majority of support for people with dementia living at home, and frequently continue to support them following admission to a care home.[1] These family relationships are particularly important in enabling people living with dementia to experience wellbeing, maintain identity and self-esteem.[2]

2.2 However, the social care system has never received the funding and workforce investment it needs to ensure carers drawing on adult social care services receive the support they so desperately need and should expect.

2.3 We welcome the opportunity to input into the Adult Social Care Committee’s Inquiry: 'Lifting the veil: Removing the invisibility of adult social care.’

2.4 We have consulted with family carers including those who sit on our charity’s Carers Advisory Panel and have focused on the questions where we feel we can add value and insight. We have included our recommendations at the end of this document.

3. Raising the profile and improving the identification and support of carers

3.1 It is essential that family carers understand their role and needs as carers. The Care Act 2014 for the first time, recognised family carers in law in the same way as those they care for, and they were given the same recognition, respect, and parity of esteem.

3.2 However, the intent of this legislation has never been matched in its implementation and this recognition is not the reality for many carers. In addition, some carers do not identify with the label ‘carer’ seeing themselves as fulfilling their responsibilities as a spouse or family member or are struggling to establish their caring role pre diagnosis.

3.3 This means that friends and family members caring for someone with dementia feel ignored and abandoned. Many have completely given up attempting to engage with the health and social care systems. In doing so, they are losing out on help, financial assistance, and support.

3.4 Local Authorities should consider ways to identify carers earlier through Joint Strategic Needs Assessments and Joint Health and Wellbeing Strategies[3] and ensure newly identified carers are contacted to recognise them as such and support them to recognise their role within 4 weeks of being identified.

3.5 There may be more than one person involved in a person's care and support. Health and social care practitioners should seek to identify all carers and understand the context of their caring situations. This should enable advice, support, and assessments to be more likely to meet each carer's needs.[4]

3.6 Evidence from consultations with people living with dementia and their family members have emphasised the considerable variability in what people believe they need, but core services can be identified, these include:

•        Following diagnosis, individualised and tailored information and education about dementia, available in a variety of forms and accessible throughout the journey with dementia

•        An ongoing point of contact; There are a number of critical points in the journey with dementia which present key opportunities for targeted information, signposting, and support

•        Access to appropriate treatment and support when this is needed

•        Interventions that are responsive to their particular circumstances and needs[5]

3.7 Dementia Carers Count would add to this:

3.8 Pre-diagnosis support: 40% of dementia cases could potentially be prevented or delayed. Yet people diagnosed with early cognitive decline are generally referred back to primary care, without preventative intervention, to wait for dementia to emerge, increasing the risk of transitioning to dementia.[6] Family carers describe suspecting something is wrong for a long time but not being listened to and being left without guidance.

3.9 At diagnosis: Despite being a critical time at which to support the person with dementia and their family, many carers feel abandoned and left to “puzzle it out” themselves. They describe being referred to GPs who couldn’t help or Memory Clinics who made one visit and were never heard from again.

3.10 One carer told us “I was given a bunch of leaflets and then left to it.” Another said, “There was no help even to go through the leaflets with me, I just felt that this was it, that there was no support and I just had to get on with it.”

3.11 “I needed help to understand the diagnosis, nothing was explained, and it didn’t make sense to me”

3.12 Peer support: NICE highlights the importance of individual befriending arrangements or support groups which help reduce social isolation and provide empathy and mutual emotional support and found that group-based opportunities, where people had a chance to meet other carers and share experiences, were particularly valuable in building self-esteem, understanding and expectations of the caring role.[7]

3.13 Respite: Many carers struggle to maintain their own wellbeing and often overlook their own needs because of their caring responsibilities. It is important carers are encouraged and supported to take regular breaks including breaks from their usual routines associated with caring.[8]

3.14 Training programmes: Evidence suggests that carers often lack confidence or feel overwhelmed in their caring role. Training containing a variety of components can improve carers' skills and confidence in caring, and their understanding of the needs of the person they care for.[9]

3.15 Financial and legal support: Carers need specific information and advice to guide them through accessing support with loss of their employment or that of the person they are caring for, additional costs involved in caring or paying for support as well as new legal responsibilities.

3.16 Support to navigate the health and care systems: As well as a single point of contact, carers have articulated the need for a one stop shop, which should not only give information and signpost to other services but offer help and support where possible.

3.18 There should also be available locally produced, carer-focused flowcharts from before and after diagnosis to show the various paths and support and where we can get information and help should be made available to carers. These would complement the dementia pathway documents commonly used by health and social care providers.

3.19 Support after caring: Support services should be extended to people when their caring role is finished, including through peer support groups.[10]

4. Carers in the workforce

4.1 Family carers who are in employment at the time they become carers often find they are not able to continue with their job as well as fulfil their caring responsibilities. A survey by Carers UK found that nearly half a million people have given up work because of caring. This equates to around 600 people every day.[11]

4.2 For those carers that want to, the benefits of remaining in work are not just economic. The sense of identity, purpose, separation from caring duties and support networks that can be formed in the workplace are all valuable to carers for strengthening their wellbeing.

4.3 The Care Act 2014 mandates providing information for carers on work, education, and training. However, evidence suggests that a lack of information and advice, combined with the fragmented nature of local support services, often act as barriers to carers remaining in, returning to, or entering work, education, and training.[12]

4.4 Carers also reported that they often avoid discussing caring-related problems with employers for fear of negative attitudes from managers, feeling a burden, or being excluded from opportunities to develop their careers.[13]

4.5 It is a requirement of the Equality Act 2010 for employers to actively promote a positive culture towards people with caring responsibilities. This could include promoting opportunities for flexible working practices and use of employee assistance programmes that can provide advice and support for working carers, as well as ensuring that staff with caring responsibilities have equal access to career development opportunities.[14]

5. Carers’ support, wellbeing, and resilience

5.1 With increasing demand for social care, reduced state provision and an unstable private care market,[15] the role and contribution of carers to health and social care is critical.[16] Maintaining the mental and physical health and wellbeing of carers is therefore essential.

5.2 Yet premature death, higher levels of disease and neglect of their own health care needs are known to be common amongst carers. They are also twice as likely as non-carers to experience poor physical and mental health, with these outcomes exacerbated by social isolation, poor information and support, and financial stress. [17]

5.3 Carers have described a lack of time or respite support to attend the appointments or concern over caring for the person with dementia if they required time to recuperate.

5.4 They are also more likely than non-carers to report feeling that their physical and mental health needs were not being met and were dissatisfied with the availability of GP appointments.[18]

5.5 Where carers have care needs of their own due to long-term health conditions or disability, an assessment of both their own care and support needs and their carer support needs should take place.[19] Where possible, healthcare professionals should be considerate of the family carer’s responsibilities and offer flexibility in appointment timing, venue, and treatment options. Respite should also be offered.

5.6 Dementia UK have reported that almost half (46%) of carers surveyed said they feel like they can’t talk about their caring responsibilities with those around them.[20] It is essential that all family carers are offered their own wellbeing support package as soon as it is recognised there is potential for them to take on a caring role. This package should include coping strategies that go beyond their caring responsibilities and recognises their personal needs and ambitions.

5.7 It should also be recognised that carers may justifiably feel overwhelmed, angry, distressed, and resentful at the situations they experience. As one carer put it “the principle of resilience should not be used as an excuse to force unpaid carers to grin and bear it”

6. Alternative forms of support

6.1 The contribution of voluntary organisations and community groups is essential to the provision of adult social care. However, it is important that this support is offered as part of a comprehensive fully funded package tailored to the needs of each individual carer.

6.2 Dementia Carers Count offers a unique range of professional health and care support to the 700,000 family members and friends in the UK who are looking after someone with dementia. We deliver free services - both face-to-face and online – that allow family carers to learn about dementia, to connect with others in a similar situation and to find ways to improve and maintain their own wellbeing while navigating the highs and lows of caring for someone with dementia. Everything we do is developed closely with family carers and delivered by professionals, so we can offer services that genuinely help carers with their needs.

6.3 Carers also benefit from Dementia Meeting Centres which are strongly evidence based and currently benefitting from an expansion programme across the UK that needs further investment and extension.[21]

6.4 As well as voluntary organisations, many family carers rely on support found through dementia cafes, community groups and other family carers. One family carer described the importance of such support, saying her local dementia café helped her by not just signposting to a local support group but arranging alternative care and supporting her to attend.

6.5 While it isn’t possible for all carers, for some there is scope to draw more on their family, close friends and wider community relationships. Including family members in the diagnosis process, as part of the care assessment or facilitating specific family and community events could help these individuals recognise the importance and scope of their role in caring.

6.6 Many family carers also find themselves relying on the support and understanding of local transport services, shops and businesses. With support, information, and education, those willing to participate would better understand their significance to the carer and feel more informed and supported. Supporting the carer to strengthen their wider support network could be especially useful to those without strong family networks.

6.7 However, due to the ad hoc nature of the funding, availability and sustainability of community and family support and without effective sign posting to voluntary organisations many carers are unable to the support they need. Too often family carers pay for care simply because they didn’t know how else to access support.

7. How valued and respected are carers in the overall adult social care system?

7.1 In the words of one family carer “the answer is obvious: they are not!” Despite often being in the best position to give an accurate picture of the person living with dementia’s mental and physical condition, there is a still a lack of understanding and an unwillingness to involve carers, including an insistence on speaking to the person with dementia, even if they would prefer their carer to respond on their behalf.

7.2 Given that carers of people with dementia make up the largest part of the dementia “workforce,” it is vital that their contribution is respected and that they are recognised as an equal partner alongside professional staff.[22]

8. Accessing the system

8.1 Carers are fire-fighting every day; they simply don’t have time or energy to go looking for support, even if it exists or they knew where to find it. One carer said, “It’s like winning the lottery when you hear someone get a support package” Another told us “There is a mystery about what is out there”

8.2 An all too familiar experience shared by family carers is finding out support by chance – a conversation with another family carer, a reference from someone at the dementia café.

8.3 Carers also describe feeling deliberately blocked from getting the support they need, many reach crisis point before anything is offered.

8.4 One carer outlined their frustration. “I haven’t had a break for two years. I haven’t been able to see my daughter [who lives abroad] in two years. I have been chasing down support all this time. There are funds available but it’s like they don’t want you to have them. Once I did access some respite support, this came along with OT appointments and funding for things we needed. It was all there but I had to fight for it for two years.”

8.5 This is also seen in the rigidity of what is available. One carer described a gateway that you can’t get through until you meet certain criteria. Once through, support is not offered based on what you need but what they are prepared to provide at a given stage.

8.6 Many family carers we spoke to identified problems more generally with communication from and between different departments resulting in carers needing to give the same information to numerous people and being shunted between one and the other.

8.7 Even with a range of experiences and professional backgrounds, including healthcare professionals, family carers describe how they have been unable to navigate the support available. It was felt to be unreachable.

8.8 All family carers are entitled to a care assessment without which family carers are unlikely to be able to access the support they need. However. a recent Carers UK report found that only 32% of those caring for someone with dementia reported having this assessment.[23]

8.9 NICE describes obstacles to carers accessing their assessment including a lack of coordination across multiple services (for example between hospitals and community services) and practitioners from teams across health and social care needing to work together but often without the relevant skills and training.[24]

8.10 Local Authority communication with family carers should include information on how to access a carer’s assessment, which should be independent from the assessment of the person being cared for, as well as a clear explanation of what the assessment involves and what they can expect. Carers should be provided with sufficient time to prepare and reflect on their needs as carers.[25]

8.11 With the progressive nature of dementia, and the necessary changes in caring responsibilities to manage this, Local Authorities should ensure that carer’s assessments take place at least annually with more regular reviews as needed.[26] If a carer’s assessment is not taken up, the person with caring responsibilities should be reminded of the offer at least annually.[27]

9. Co-designing services

9.1 Carers value being recognised and respected as core members of the team around the person they care for and have valuable information to contribute to care.[28]

9.2 However, we often hear from carers who wish to be involved but have experienced difficulty in doing so or who find that agencies only make minimal effort to involve them.

9.3 Health and social care organisations should promote ways of working with carers that acknowledge them as expert partners in care and value their skills and knowledge about the person they care for. These approaches should be incorporated into formal policies and processes.[29] They should also be flexible and considerate of the carers’ capacity for involvement.

10. Transition

10.1 For family carers of people living with dementia, key moments of transition include the stages of dementia, the move to care homes, a move out of hospital, supporting someone through end of life, and the move to being post-bereaved.

10.2 These transitions can also refer to the carer's own health needs. Social care currently assumes carers are all fit and well with no illnesses of their own. Yet it is not unheard of to see people with dementia care for a partner or parent with dementia.

11. Conclusion

11.1 There are huge barriers facing family carers in getting the support they need. As well as feeling invisible, many carers feel actively ignored and only receive the support to which they are entitled after reaching crisis point.

11.2 Although the Covid pandemic has inevitably had a huge impact on the health and social care systems, funding and resources across social care have been in sharp decline over many years. Until the professional and unpaid care sector are treated with parity to those in the health system, the situation is unlikely to change.

11.3 We look forward to welcoming the Dementia Strategy. There is urgent need for an ambitious fully funded long-term plan that addresses earlier diagnosis and better support before and at diagnosis, a fully trained and staffed workforce, and well signposted, tailored support for family carers that is available regardless of where they live, for as long as they need it.

12. Dementia Carers Count believes that support for family carers should be:

• A service carers don’t have to fight for
• Fully funded
• Evidence based
• Co-designed with the family carer / wider support network
• Offered at the point dementia concerns are raised and considerate of differing life and journey stages
• Flexible and available as the need arises, including urgent and out of hours support
• Personal, from a range of tailored options which are diverse and inclusive
• Standard across services, ending the postcode lottery of diagnosis and support
• Easy to access and navigate

13. Dementia Carers Count recommends:

13.1 Greater recognition and involvement of family carers: Many family carers talk about a loss of identity when they became a family carer. At the outset, all carers should be offered the choice of becoming a carer and then of the levels of care they are comfortable to provide. The carer should be supported to feel empowered and understand their options to make the best choice for them and the person they might be caring for.

13.2 The Government must ensure the ambitions of the Care Act 2014 underpin efforts to improve the family carer’s role and ensure family carers are truly acknowledged and valued as expert partners in care. Effective ways of enabling all carers to contribute must be found and any attempt to engage family carers should consider the easy facilitation of their participation.

13.3 Support that is personalised and flexible: Every carer’s health and well -being needs should be assessed and addressed when they first become a carer, with regular follow up checks. The support package offered should address the family carer’s location, access issues, and identified support needs. It should include access to free, flexible and locally available respite care, consider emergency situations for example receiving cared for persons from hospital and continue to be offered after the caring responsibilities have ended.

13.4 Emotional support: Emotional and peer support and one-to-one coaching must be offered to carers and former carers and be tailored to support their individual needs, including, for example anticipatory grief and should form part of the government’s anticipated mental health reforms.

13.5 Training, financial and legal support: There should be a clear and transparent system advising carers what benefits and grants they can claim and how to claim them, as well as free, tailored legal advice outlining their rights, responsibilities, and options as a carer.

13.6 Bespoke training and support services are needed post-pandemic to rapidly prepare new family carers stepping up to respond to the backlog in patient throughput in hospitals whilst awaiting community care or placement. 

13.7 Digital assistance: Much support family carers receive has now moved online and will continue to do so. The Department of Health and Social Care should work with the Department of Culture, Media and Sport and the Cabinet Office on a plan to eliminate digital exclusion and support the use and uptake of new technologies in social care.[30] This should include help for family carers to understand what is available to them and guidance on accessing the range of quality digital support available.

13.8 Support in employment: It is essential that family carers who wish to do so should be encouraged to recognise their value to employers using the skills they have built up while caring[31] and supported to remain in or return to employment. This support should include statutory leave and ongoing support and flexibility from employers to ensure carers who wish to are able to maintain their professional and caring responsibilities.

13.9 Support for returning to the workforce should include specialist career guidance from practitioners who understand the particular challenges faced in combining work and caring, including associated benefits and welfare advice.[32] Employers should be required to have a carers strategy.

27 May 2022