Feedback tells us the support is invaluable at what can be an anxious time for families. One client commented “how lovely it was to speak to a human being that truly understands.”
Shaftesbury launched the new service in April 2025 in response to the growing need for dementia support across the county of Suffolk. Each month we receive approximately 250 new referrals which is an indication of demand.
Our team of 14 experienced advisors work mainly in the community, providing comprehensive, practical support for individuals with memory concerns and dementia, as well as for family carers.
A local helpline is operated seven days a week so anyone can call for advice and self-refer themselves. On average the helpline receives 160 calls a month.
Service refinement
An internal audit has reviewed outcomes from the first year, the findings of which will help us improve the service going forward.
An advisory and governance group made up of people with lived and professional experience of dementia also meets bi-monthly to keep the service on track and ensure we are listening to feedback and responding to local need.
One of the service improvements has been reduced waiting times for people who need support. “Being able to respond to clients in a timely way within one to two weeks has been a great achievement for the team,” says Alana Page, Operations Manager.
One year on, there have been no staff changes which ensures continuity of care. People we support tell us they feel listened to and well supported. They benefit from information signposting and have greater clarity about how to navigate life pre and post-diagnosis.
“This conversation has been totally enlightening, I never knew there was so much support out there, thank you!” said one client.
Of the 3,000 people contacted, only 20% have been diagnosed with dementia. The majority – 46% – are waiting for a diagnosis, with a further 8% seeking advice about memory concerns.
Caring for carers
Approximately 20% of referrals have been for people who are caring for someone with dementia. Ensuring carers receive the right level of support is vital to prevent or delay the person going into a care home. Family members have expressed a sense of relief at being supported by our empathetic and experienced team.
“The helpline advisor listened and helped me understand what my wife is going through. It’s made me think how I say and do things which has made a massive difference to our everyday life. I feel that I am able to call when I need help and advice,” said one service user.
Support in practice
We work with clients for up to 12 weeks to ensure needs are addressed and they are linked up to other local support. A key benefit is an electronic record system, which gives our advisors access to shared information from GPs and memory clinics to avoid people having to repeat their background information.
“We aim to empower people to live independently, safely and well for as long as possible within their own community. We don’t discharge anyone from the service, we provide a consistent point of contact so if needs change people can call our helpline and we can pick up from where we left off,” says Jo Marshall, Interim Director of Clinical Services.
After Jane* was referred to Shaftesbury by her GP, she was contacted by the service for an initial telephone consultation which was followed up with a home visit. Our holistic assessment established what level of support she required, making Jane feel “relieved and listened to”.
As her carer, Jane’s husband was surprised to find we were also concerned with his health and emotional wellness. Shaftesbury supported him to apply for a Council Tax discount and a Blue Badge and helped with a grant application for a new mattress and carpet. We also made a GP referral in relation to his concerns about Jane’s weight loss.
This is a good example of Shaftesbury’s holistic approach as the person living with dementia and family carers can receive joined up support from the same service.
In John’s* case, his family found out by chance he had dementia. Having attended a memory clinic for assessment, they heard nothing back so assumed all was ok. They only learnt of his diagnosis when a receptionist at the GP surgery made reference to it.
As John’s adult children had already been caring for him, they attended one of our dementia support events, describing it as a “warm welcome”. John’s daughter said she felt “included and grateful” that Shaftesbury support also extended to her and her brother.
Community connections
One of the big successes in this first year is the number of partnerships we’ve established locally. Shaftesbury is now working with over 50 organisations, including Suffolk Family Carers, Dementia Life and Warm Homes Suffolk.
We have also attracted compassionate volunteers who offer a listening ear to individuals and families. They receive training to promote the service at our events, provide administrative support by keeping our resources up to date and help us collate feedback from people we support.
“Continually listening and learning from the experiences of people we support is so important as it enables us to continually develop the service and ensure it meets needs. Support from our volunteers is invaluable as they can be objective in a way team members can’t be,” says Jo Marshall.
Happy anniversary
When asked to reflect on the first year, one of our advisors said: “We are local, personable, and professional. We listen, inform, support and stay connected as needed.”
Another staff member said they were really proud to be part of the dementia team since it launched: “Our staff have lots of different experiences and knowledge and I feel we have an amazing amount of information to be able to support each other. Everyone at the service has a real passion to make a difference within Suffolk.”
(Featured image: Shaftesbury dementia advisors, Rachel and Rachael)