Report reveals serious gaps in dementia support

• More than one in three (37%) respondents (1) caring for loved ones with dementia offered no support following diagnosis and report feeling helpless, isolated and unable to cope
• Charity calls for action to tackle a deficit in dementia support, as nearly one in four Britons express willingness to volunteer their time to help (2)
• 81% report improvements in their loved one with dementia after attending Royal Voluntary Service support groups (3)

The Living well with dementia: better community provision for all report from national volunteering organisation, Royal Voluntary Service and the University of Birmingham reveals over a third (37%) of people caring, or who have cared for, loved ones with dementia have been offered no support to help them cope since diagnosis. (1)

For nearly one in three (30%) respondents (1) dementia is a lonely journey, with nobody, be it a professional, family member or friend, to turn to for advice or assistance.  

This lack of support is having a devastating impact. Carers surveyed (1) report feeling heartbroken (40%), helpless (35%), isolated (27%) and unable to cope (26%). For over one in five (22%) respondents their situation has made them consider if life is worth living.

On the back of these stark figures, Royal Voluntary Service is now calling for urgent action to plug gaps in service provision to enable more people to live well with dementia nationwide. And the charity believes that alongside increased funding, volunteers could hold the key to creating more vital capacity.

Volunteering is already an integral part of effective dementia support, but new research (2) intimates many more Britons may be willing to rise to the challenge.  Nearly one in four (24%) GB adults, equivalent to 12.5 million people, expressed an interest in volunteering to support a dementia group in their community. This rises to 35% of individuals who are or were a carer for someone living with dementia and represents a potentially huge pool from which to recruit.

Royal Voluntary Service’s report sets out to understand more about how those affected by dementia are impacted and explores the availability and effectiveness of non-medical support, such as activity and support groups.

It combines analysis drawn from a specially commissioned survey of 1,000 UK unpaid carers of people living with dementia, a separate public opinion poll of 2,000 GB adults, a literature review by Dr Richard Elsworthy, research fellow at the University of Birmingham and primary data from users of Royal Voluntary Service’s dementia support groups, including people living with dementia and their carers.

The study indicates a significant deficit in external dementia support being offered to carers and their loved ones after diagnosis, with availability varying according to where they live. However, when support is accessed, the study shows it can be really beneficial.

Key findings include:

• Over half (51%) of all caregivers surveyed (1) (growing to 92% of caregivers aged 55+) believe there’s not enough support available to carers of loved ones with dementia.
• For those offered support, this is most commonly a referral to a local dementia support group (49%) followed by non-medical NHS support (42%) (1). Royal Voluntary Service impact studies highlight the value of this type of in-person support. Over a three to six month period, 81% of attendees with caring responsibilities at Royal Voluntary Service dementia groups noticed improvements in their loved ones, including positive changes in mood (63%), appetite (19%), attention (22%) and wellbeing (57%)3. 98% of caregivers attending said they too had benefitted. (3)
• Existing studies also suggest these group interactions provide opportunities to learn from others which can significantly enrich relationships between people with dementia and their caregivers. (4)
• However, locality is a major barrier. Over a fifth (22%) of carers surveyed (1) say the support offered was a long distance away and/or hard to reach. The same number state the journey made it impossible to attend. For nearly half (49%), the signposted support was four or more miles away.
• This location challenge is reflected amongst attendees of Royal Voluntary Service’s dementia groups: 56% of people accessing our services report limited provisions in their local area. (5)
• High demand for support. The majority (63%) of caregivers surveyed (1) say they and their loved one would benefit from the help of a dementia service run by professionals and volunteers, with 42% wanting more access to respite and/or support from other carers in a similar situation.

 "Dementia is a growing challenge, with rates expected to rise to 1.4 million by 2040. The impacts are far-reaching and with no effective medical treatment yet available, it’s becoming increasingly crucial to offer more support to all those affected. Worryingly, our study shows too many are subject to receiving whatever is available in their local area or simply have no support at all.

"We need to put an end to this limited and unequal service provision, often situated miles away from home and which is leaving so many people living with dementia and their caregivers without anyone to turn to.  Increased funding combined with a mass mobilisation of volunteers would enable services like ours to be rapidly upscaled and expanded for the benefit of more dementia communities across Britain."

Dr Rachel Fox, national dementia development manager at Royal Voluntary Service

 "The need for dementia related services is present more than ever. Even if pharmacological treatments effective in reducing the underlying causes of dementia become available, it’s likely a combination of medical and non- medical interventions will be required to maximise outcomes for individuals with dementia.

"Lifestyle management and engagement in psychosocial activity is key and support groups are highly beneficial to people with dementia and their caregivers.  We now need to develop our understanding of how to get maximum benefits from these sessions and mitigate against any circumstances restricting access."

Dr Richard J Elsworthy PhD, a research fellow specialising in Sport, Exercise and Rehabilitation Sciences at the University of Birmingham

To address gaps in regular and continued support, Royal Voluntary Service has since 2017, developed a steady growth of activity and support groups for people living with dementia and/or their carers, family and friends.  Built on a foundation of local volunteering, the charity currently runs 60 dementia support groups across 12 localities in England, Scotland and Wales, supporting more than 1,000 people annually. 

The groups are all run by staff together with the support of volunteers and invite those affected by dementia to meet on a regular basis to form a peer support networks and take part in wide variety of activities to promote both physical and cognitive wellbeing. The groups are designed to help people realise they aren’t alone, supporting them to have fun in a welcoming community.

"The dementia group has been a godsend for both of us. The group offers empathy and compassion for each individual and there’s a happy, upbeat atmosphere as soon as you walk in. She’s [mum] invigorated by it and finds the activities stimulating. She will speak to my sister and me about who she’s met and what’s she’s done.

"Dementia affects family members as much as it does those living with the disease, this Royal Voluntary Service group recognises that. It’s so helpful speaking to others in a similar situation - we compare notes and offer each other reassurance."

Colin Moxey has been attending a weekly Royal Voluntary Service Living Well with Dementia group in Hawick with his mother Margaret since 2023

On the back of the findings Royal Voluntary Service has made a series of recommendations to support the growth of dementia services in Britain. This includes an appeal for greater investment, and cross-sector collaboration, to facilitate a scaling-up of vital community support and an invitation for medical and academic researchers and experts, including those with lived experience, to team up to conduct original research that will help maximise the effectiveness of services.

Footnotes

1. Censuswide surveyed 1,000 people in the UK aged 16+ between 28 June 2024 – 03 July 2024 who have cared/are caring for a loved one with dementia (not in a paid role). Censuswide abides by and employs members of the Market Research Society which is based on the ESOMAR principles. Censuswide is also a member of the British Polling Council.
2. Figures from YouGov Plc. Total sample size was 2006 adults, of which 148 were or are carers for someone with dementia Fieldwork was undertaken between 20 - 21 August 2024.  The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+). Figures extrapolated to GB population aged 18+ -based on ONS.
3. Emerging data from baseline and impact evaluation of Royal Voluntary Service Dementia Groups as at 13 September 2024. Based on 53 attendee responses to baseline and impact surveys over a three to six month period.
4. Hoel, V., W.Q. Koh, and D. Sezgin, Enrichment of dementia caregiving relationships through psychosocial interventions: A scoping review. Front Med (Lausanne), 2022. 9: p. 1069846.
5. Royal Voluntary Service Annual Dementia feedback survey - April 2023 to March 2024.  Surveys were offered to all group members - people living with dementia and carers. 340 responses were completed.

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