Report Reveals Serious Gaps In Dementia Support
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.
For nearly one in three (30%) respondents 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 the report reveals. Carers surveyed 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 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.
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:
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.
Dr Rachel Fox, national dementia development manager at Royal Voluntary Service
Said: “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.”
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.
