What initiated this initiative?
At the start of the first national lockdown in response to increasing Covid-19 infections it became clear that people living with dementia and their family carers would be significantly affected by this lockdown. Regular groups and activities which had been positively contributing to the health and wellbeing of people with dementia had to stop. This caused confusion and upset for those affected.
Family carers often had to shield 24/7 with people living with dementia, without any respite support. It was also believed there were hundreds of people living with dementia in the community who were not linked to any community services and may slip though the net of additional support available.
The Dementia Strategy Group, and relevant Commissioners, quickly understood these issues, and were able to source a small amount of funding from Sheffield CCG to enable relevant people to be identified and proactively contacted by Age UK Sheffield and connect these people to appropriate support from Sheffield Carers Centre and organisations in their local community.
Key priorities and principles of the group
The service aimed to use Age UK Sheffield’s status, process and networks to:
- Obtain lists from GPs surgeries of people living with dementia on their register;
- Proactively contact those people to assess how they manage to live well through the Covid pandemic, and what additional support they might need;
- Connect them to appropriate support from Sheffield Carers Centre and organisations in their local community
This service was part of the work of the Sheffield Dementia Strategy. The strategy is cross-organisational (including Sheffield City Council, Sheffield CCG, Age UK Sheffield, Sheffield Teaching Hospitals, SHSC, Alzheimer’s Society) and has an overall vision ‘To ensure that people with dementia of all ages and their families can reach their full potential’
The service aimed to ensure that nobody living with dementia in Sheffield fell between the gaps in statutory service provision, and take a whole-family approach to ensure carers’ needs were addressed.
From identifying the need for this service, its implementation was put together very quickly. Funding was sourced quickly by Commissioners, and Age UK Sheffield had the flexibility to be able to move quickly, redeploying existing staff onto the service at short notice and utilising relationships they already had in place with statutory and community sector partners in the city.
Dementia registers were received from a number of GP practices, compiled by Sheffield City Council then sent to Age UK Sheffield.
Age UK Sheffield staff then telephoned everyone on the register and held a person-centred conversation with the person living with dementia and/or their family carer. The conversation sought to understand the person’s current situation, identifying any immediate or long-term needs, and help to address those needs.
These needs may have been addressed by connecting them up to Sheffield Carers Centre or their local People Keeping Well lead organisation, supporting the individual with benefit claims such as Attendance allowance.
Sheffield Carers Centre made contact with the carers that were referred by Age UK Sheffield to find out their support needs for themselves as carers. Each carer was provided with support tailored to their own situation, which included information, advice and signposting, Carers Assessments and support planning. A number of carers needed ongoing weekly contact to provide social contact, a listening ear and checking in regarding their ability to continue providing care.
“I really didn’t know that these things were available. I’ve got someone coming every week to deliver my shopping and someone else comes to my door every week to check that I’m fine”
“Lockdown has been very isolating. We had been looking into some kind of befriending but hadn’t been sure where to look. Thank you for getting in touch and for your help.”Reflections from a beneficiaries supported by Age UK Sheffield’s Dementia Service
Age UK Sheffield worked effectively to respond to several challenges in the delivery of this service, these were:
- Contacting people by telephone is very time-intensive. When people answered the call it often took time to understand their situation and hold a conversation about their needs with them. Follow up conversations with family members were often required to fill in the gaps and to establish how family carers were managing. In many cases, staff had to try telephoning on numerous occasions, 92 of the 658 people on the dementia register could not be reached by telephone.
- It was not obvious from information provided on the dementia register how long the person concerned had been living with dementia. In most cases it was necessary to speak to the next of kin to check wellbeing and assess any areas of support required.
- It was initially anticipated that the dementia register would mainly include those living in the community who were not in touch with services. However, in addition to the 14% of people on the register who were living in Care Homes, there were also many people who were living with quite advanced stages of dementia and receiving social care packages and referrals to community organisations was not suitable.
- Community support services were, in some cases, not able to offer immediate support because their own activities were suspended due to the pandemic.
- Sheffield Carers Centre reflected one of the key challenges for supporting carers has been the huge reduction in community activities and services that would usually be available for a person with dementia; these can provide a restpite care for the carer. There were very few alternatives to signpost carers to, therefore there was an increased need for extra emotional support.
Some of these challenges we found are long-term issues which are not specific to the pandemic, and are experienced by families every day. Some of these people were clearly in need of support and not connected to statutory or community services.
“I haven’t talked to anyone about the way I’m feeling. Thank you so much for your help and support. It really helped me”
“It’s good to know that there is so much support out there if needed. I’m comforted in knowing that you are there if help is needed“Reflections from a beneficiary supported by Age UK Sheffield’s Dementia Service
Age UK Sheffield has made contact with everyone on the dementia lists by telephone, 658 people; for those individuals that could not be contacted by telephone, a letter was developed that included information about key organisations that would provide support.
The feedback from calls were very positive, people have been grateful to be contacted, have used the calls as an opportunity to offload about Covid-19 and to raise any issues that are of concern. These calls have identified a number of needs for people ranging from blue badges, help with benefits, and power attorney to people who referred to the Alzhiemers Short term Intervention Teams to avert the crisis situation.
A further outcome of this project has been that previously ‘unknown’ carers were identified through the process, their needs as carers were recognised and they benefitted from specific support to maintain their caring role for as long as possible.
By proactively contacting identified people for this service it may help to improve the diversity profile of beneficiaries. In general, 95% of our beneficiaries identify themselves as “White British” and only 5% as another ethnicity, whereas 12% of the beneficiaries of this service were from another ethnicity. The information collected may support future approaches to targeting support by directly approaching people, instead of waiting for them to proactively seek out support, or rely on signposting.
Implications, how may we work differently in the future?
Whilst the funding for this project has come to an end, Age UK Sheffield is continuing to receive dementia registers from other GP networks and are continuing to make contact with those living with dementia and their families using other short-term resources they have secured.