| dc.description.abstract | Living alone is increasingly common. Today almost 1 in 3 households are single-person households. A
significant number of people living alone, especially in later life, are contending with health problems
including dementia and progressive neurological conditions. There is still a widespread assumption
that people with progressive neurological conditions have a carer available, and neither health and
social care services nor community provision are designed to accommodate the needs of people
living alone. This is unhelpful and costly for individuals and services.
We report on research exploring what can be done to provide appropriate services and support for
people who live alone with a progressive neurological condition, taking Parkinson’s disease,
Huntington’s disease and motor neurone disease (MND) as exemplars. The report outlines findings
from a scoping review of research and grey literature, an exploration of primary care data to examine
the recorded frequency of living alone with each of these conditions, and consultations with people
with lived experience, practitioners and other stakeholders.
We found that one-third or more of people with these conditions residing in the community are
living alone. Research evidence was limited but supported the understanding that this is an
inequalities issue, which was echoed by contributors to the consultation exercise. Many of the points
raised potentially affect everyone diagnosed with a progressive neurological condition, but living
alone adds a dimension of inequality. Furthermore, there is a stigma attached to being alone that is
sometimes experienced in interactions with health professionals. Our research highlighted eight key
areas where policy innovation could reduce inequalities and stigma and enhance capability to live
alone with a progressive neurological condition:
1. Knowing the numbers to better plan support
• Estimating the number of people with a progressive neurological condition living alone.
• Adapting systems and processes to ensure living situation is recorded, updated and shared.
2. Reducing inequalities in access to services
• Providing people living alone with a specialist nurse, key worker or care co-ordinator.
3. Providing flexible, personalised, co-ordinated care
• Commissioning services with flexibility to meet the needs of people living alone.
4. Educating the health and care workforce and the public
• Ensuring all health and social care professionals, commissioners and NHS Continuing Health
Care assessors have an appropriate understanding of these conditions and are aware that
some people live alone.
5. Facilitating access to financial support
• Streamlining the process of applying for Continuing Health Care funding, including allowing
professionals to apply on behalf of people living alone, and supporting people to claim
benefit entitlements.
6. Strengthening community responses
• Working with charities and community organisations to strengthen resources for providing
practical support and reducing isolation and loneliness.
• Promoting integration of disability-friendly design into new housing stock.
7. Supporting informal carers
• Encouraging health and social care professionals to engage with and involve informal carers
including those living at a distance.
8. Reviewing research priorities and inclusion
• Identifying living situation as a required dimension of research inclusion.
• Allocating funding to research that can lead to patient benefit in the short term, for example
research on managing troublesome symptoms. | en_GB |
