Living Alone With Dementia: Managing Without Informal Support to Contact and Navigate Services

Purpose: People with dementia can and do live successfully on their own, but there are additional challenges for people living alone without informal support. This paper reports findings of the first study in the UK to examine needs and experiences of, and services for, people with dementia who live alone without informal support. Method: The study involved a service audit of 13 local authority commissioners in two English regions, interviews with 22 people with dementia who live alone without informal carers, and case studies of four services supporting this group. Findings: Awareness of this population among commissioners was limited. There were very few services which explicitly supported this group, and some mainstream services excluded people without carers. None of the local authorities collected data on numbers of people with dementia living alone, or those without informal support, in their area. Some participants with dementia had contacted social care, but this had not always resulted in appropriate support, and people reported problematic interactions with staff, assumptions that friends would provide care, and support not being available at the right time. Self-funders were left with little support. People with dementia were resourceful, using general services, technology, and other tactics, including cleaners, meal delivery, community taxis, and automatic reminders to organise their lives. However, as many of these additional services have a cost attached, there is potential to exacerbate existing inequalities. Participants wanted more support, particularly with finances and administrative tasks. Services can help this group with supported handovers, allowing self-referral back into a service, and keeping case files open. Conclusions: Both the number of people with dementia, and the number of people ageing without children, are rising, and it will therefore become increasingly important to facilitate effective support for people with dementia to live independently without informal support.