Living alone with dementia: managing without formal support to contact and navigate services

PROJECT STATUS: Closed

START DATE AND DURATION: April 2022 - November 2023

Summary

This project focused on understanding the needs of people with dementia who lived on their own and did not have someone to help them access services or act as a point of contact. The aim was to find out what help they received, how social care worked for them, and how it could be improved.

The research involved:

Interviews with people in this group
An audit of services available in two English regions
Case studies in four areas to explore what support was available, what worked, and what did not
Workshops with people with dementia and practitioners to share early findings and co-develop useful resources

The team also developed ‘sharing and learning networks’ in the two regions so that researchers, practitioners, and people with dementia could learn from each other throughout the project.

Key Findings

This is a largely hidden group - local authorities do not know how many people in this group live in their local area and therefore, their unique needs are overlooked in service planning/commissioning.

- Not everyone will be ready for support immediately after diagnosis, but for people without a carer, it is not always obvious how to access information about social services/support later on.

- Finding the right support can take time. It can take a while for people to find the right group or service for them when they are having to navigate by themselves.

- A variety of services, and ongoing and widespread communication about them, is needed to increase the chance that people with dementia will find out about and be able to use them.

- Some services inadvertently exclude this group and create additional inequities. Inequities can be

exacerbated by timing and location of social support/groups, lack of transport facilities, and requirements for a carer be present when someone with dementia is attending support activities/groups.

- Long-term and regular contact from a service can be important, even if active support is not needed at that point.

- Some people with dementia who live alone without informal support have a wide network of support around them, and are proactive in creating this. However, not everyone with dementia can take on this role for themselves. Peer support can be key for supporting people emotionally and practically – services can facilitate/support these peer-to-peer support networks.

- Services and support networks can be fragile - funding ends, volunteers leave, neighbours and friends have their own health problems. It can be particularly difficult for people without informal care to find a new support group or service if theirs ends, and so a contingency plan should be put in place.

Sometimes simple, inexpensive process changes can help support this client group - supported referrals, regular contact, and taking time to get to know someone well are particularly helpful.

IMPACTS

As part of this study, we co-developed resources for commissioners, practitioners, people with dementia and the public, 6 short videos and a training guide - see our relaunched website: https://livingalonewithdementia.co.uk/. This website will be live for the next 7 years.

We received additional monies to recruit a social care implementation specialist to support communications around and take up of resources, run webinars and launch events, and undertake a light-touch process evaluation of using the resources in practice. (See impact case study). One of the two implementation case sites used this work to inform their Dementia Strategy and the other shared the resources on their internal organisational policy and procedure repository, where it had been accessed more than 70 times by the end of the study.

Dissemination and actions:

We have presented the findings at local professional groups. For example, the Sheffield Dementia Strategy Group, where staff committed (meeting action) to review their services using the co-developed resources. For other examples, see impact case study document

Partners & Collaborators

Sheffield Hallam University (SHU)

University College London (UCL)

NIHR ARC North Thames (ARC NT)

Innovations in Dementia

Leeds City Council

NHS Leeds Clinical Commissioning Group (CCG)

News

New project aims to understand the needs of people living alone with dementia

Lead Investigator

Jenni Brooks (SHU)

Investigating Team