Here's a novel thought. Why don't we support unpaid carers for Dementia Action Week 2024?

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Dementia care is underfunded by the English government, leaving families to bear the burden. Pledges could call for increased government funding and a national dementia strategy that prioritises supporting unpaid carers, including through social benefits, anti-discrimination policies, and access to respite care. While “dementia awareness campaigns” have had some success in raising general awareness about dementia, they have generally had limited impact in improving carers' rights for dementia in England in 2024. A more enlightened and informed approach clearly needs to be articulated, and operationalised.

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Admitting there is a problem at all

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Clearly santising dementia beyond all recognition has not helped

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Some people have quite fraudulently clumped together ‘mild cognitive impairment’ and ‘dementia’ as if they are the same.

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They are not.

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To recognise that we have a problem with dementia at all stages of the recognition, care and support process, we do need to, at the outset, recognise that dementia is a terminal illness in the end.

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As for co-production, and the problems inherent with lack of inclusion of certain groups within the dementia space because they are simply embarrassing to the dementia narrative, we need to admit we can’t plan a route if we get rid of half of the map.

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This is also important to recognise in Dementia Action Week.

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Unpaid caring is a problem, but carers are part of the solution. They are not however a finite expendable resource and are capable of burnout and exhaustion. ?Without them, the entire health and social care will collapse.

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The caring issue

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I was an unpaid family carer for my mum living with dementia 24/7 for years until her death in July 2022.

I in fact gave up the chances of salaried work to be close to her - to show my love, solidarity and affection. It's time I don't regret. It was exhausting, and yet incredibly rewarding. There is actually a very engaging sociological literature on love and care.

Campaigns have primarily focused on topics like improving recognition of dementia, dementia care, and decreasing public stigma, rather than specifically addressing carers' rights and support. The coverage and reach of these campaigns consequently has often been insufficient to drive population-level changes in awareness. Campaigns that rely on national mass media were more successful than those with limited budgets and resources.

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Campaigns have struggled to effectively engage and raise awareness among certain demographic groups, such as those with low health literacy or socioeconomic status, who are often underrepresented in clinical trials and awareness initiatives. It is truly appalling to observe the lack of diversity seen in charity staff themselves working in the dementia space and their leadership.

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While campaigns may increase awareness among those directly exposed, this does not necessarily translate to broader, population-level changes in knowledge and attitudes.

There is still a general lack of public awareness about the potential for dementia risk reduction and the specific actions individuals can take, which is a crucial first step before behaviour change programs can be developed and implemented. To educate the public aout these evidence-based interventions is clearly a national priority.

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I believe very strongly about one major challenge, however. Healthcare professionals, employers and wider society have an important responsibility to help people with caring responsibilities, both paid and unpaid, get the right support when they need it. I become awareness of this deficit all the time in most of the dealings I have had on carers’ councils locally here in London for the NHS.

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People providing unpaid care often fail to identify their caring role because they see themselves primarily as a family member or friend, or the process of taking on a caring role is very gradual as the condition of the person being cared for deteriorates over time. In simply language, carers too often don’t identify as carers. Other barriers include carers being too busy to realise the role they’re undertaking, or not feeling like the amount of support being provided is enough to be identified as a carer.

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"Dementia Action Week 2024" will be held from 13-19 May 2024. It is actually to be easily cynical about this, thinking it is simply a marketing opportunity for people who already have the luxury of thousands and millions in their marketing and branding budget. As someone who came top in his own MBA in marketing, I have some sympathy.

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The purpose of Dementia Action Week is to raise awareness of dementia and what can be done to support those living with it, as well as those caring for them. The Alzheimer's Society, which runs the campaign, reports a 43% increase in calls to their support line during the week. The awareness week is important to educate more people about dementia, as it is not just a normal part of aging, and to encourage actions that can make communities more dementia-friendly.

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Caring can happen to any of us at any time, when we might provide unpaid care to a relative, close friend or neighbour because of chronic illness, including mental ill-health, dementia, disability, or older age. ?Millions of people providing unpaid care help their family, friends and neighbours live longer in the community.

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Employers should provide more support to staff with dementia carer commitments, such as flexible work arrangements and carer benefits. This not only helps retain valuable employees, but also has economic advantages for businesses by reducing costs related to absenteeism and turnover.

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Globally, an estimated 50 million people live with dementia and because there is currently no cure for the condition, this number is projected to triple to 152 million by 2050. Women contribute around 71% of the global hours of informal dementia care, with the highest proportion in low income countries.

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The findings in the Carers Week 2023 research report demonstrate the need for Government and all areas of society to play a role in supporting millions of people to identify their caring role and get help.

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The polling reveals that the vast majority of carers could be missing out on important information, support or advice that could make a real difference to their day-to-day lives.

Nearly half of those who took longer to identify themselves as a carer (46%) said they missed out on financial support as a result of not knowing they were a carer, and 35% missed out on practical support. This lack of support can leave unpaid carers isolated; unable to take breaks from caring, struggling to look after their physical and mental health, stay in work or education, or manage financially.

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Furthermore, in their recent “Invisible” report, “Dementia Carers Count” state that carers are in desperate need of emotional and practical support to help them cope with the complexities of caring for someone living with dementia. However, carers have said that they feel “invisible” to health and social care services and like they “don’t matter”. Only a quarter of dementia carers say that they have been able to access support when they have needed it and almost half have struggled to get advice from their local authority about how to pay for and organise any support.

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Many unpaid carers do not "self-identify", missing out on crucial support. Pledges could promote initiatives to better identify and connect carers with available resources and services.

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Dementia Action Week pledges could be submitted that resonate with current issues could focus on improving employer support, increasing government funding and carer-focussed policies, and enhancing identification and support for the millions of unpaid dementia carers in England. Existing policies on dementia care have a disproportionately dire impact on unpaid women as comprehensively evidenced elsewhere.

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Next steps

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To lobby more effectively for carers' rights with an incoming Labour government in 2024 or 2025, the following steps could be taken:

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Carers UK should continue to build on their "Vision 2025" strategy by further amplifying the voices of carers and raising awareness of the challenges they face. This includes expanding their awareness campaigns to reach broader audiences.

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They argue, and I agree, that:

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“To do this, of course, we need carers to recognise that they are a carer sooner

so we can help them at the outset of their journey, we need to breakdown the ‘hierarchy’ of caring and we need to be there for them at the end of their caring journey. We need to be bold and brave. In short, we need to be more assertive and robust in our demands for carers.”

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The current UK government's "Next Steps to Put People at the Heart of Care" plan outlines several initiatives to improve support for unpaid carers, such as requiring local authorities to demonstrate how they are supporting carers through the Better Care Fund. Carers UK should closely monitor the implementation of these policies and advocate for robust accountability measures.

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It is clearly striking that,

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“Of the ￡1.7 billion the white paper committed to reform, up to ￡600 million remains to be allocated, which will be invested over the next 2 years after we have drawn on lessons learned from our investment in improving discharge. This will make sure we are effectively targeting the areas that matter most to people. I want you to have confidence that things are getting better and will continue to do so - not just for next winter, but for the long term.”

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Despite the general lack of diversity, which is a major barrier to participation and accountability, organisations need to work together and break down their regimental silos. This is clearly very important in any approach which embraces intersectionality as I recently described.

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For example, Carers UK could collaborate with other disability rights organisatons like Disability Rights UK and the dementia charities to present a unified set of demands to the next government. This could include calls for increased financial support, better access to respite care, and stronger employment protections for carers. They also could and should leverage events like "Care Day" and “Dementia Action Day” to further raise the profile of carers' issues and engage Members of Parliament, encouraging them to attend screenings of films that highlight the challenges faced by care-experienced young people. By continuing to build a strong evidence base, amplifying the voices of carers, and forging strategic partnerships, Carers UK can position itself as a powerful advocate for carers' rights with the incoming government. That is likely to be a Labour government.

Please find me on X at @dr_shibley.