Our proposed model of independent living with support

Most people with young onset dementia want to stay living at home for as long as possible with the support available for families through the health and social care services, or private providers of respite and personal care. We know however, that people with young onset dementia often spend long periods of time at home on their own and this may affect their health and wellbeing. It can also be very stressful and worrying for their care-giver. There may also be an impact on the wider family, including any children still living at home, who may need support to better understand their parent’s condition.

Research by Christian Bakker (2013) found that following diagnosis people live at home for an average of nine years before moving into residential care. In Oxfordshire around a quarter of people with young onset dementia require specialist residential care and have little choice but to move into a conventional residential care home, which may not meet all their needs. In particular, people may have higher activity levels than residents in care homes (whose average age is 84), and the lack of opportunity to go out for walks or take part in activities outside the home can result in feelings of frustration.

YoungDementia UK Homes is developing a model of support which:

• supports people as members of their families and the wider community
• is personalised to their particular needs and is regularly reviewed in partnership with them and their families
• provides a safe and secure service, delivered by highly skilled and compassionate staff, whilst promoting independence, good health and wellbeing

Our planned support service will have staff on site 24 hours a day, seven days a week. Each person’s needs will be individually assessed prior to living in the home but also updated on a regular basis to ensure that as their condition changes, we continue to meet their needs. This assessment will cover not only health and social care, but also their social needs which could include contact with their families, going to events outside the home, or even providing administrative support to help with day to day living.

Our ethos is to encourage and support continued contact with their families, but also to help people continue to do activities they have always enjoyed, for as long as they wish to. We will be encouraging volunteers to be part of this through our ‘Friends of Homes’ project, which will engage people from the local community.

We are working closely with those working in health and social care and others with an interest in the care of people with young onset dementia, to ensure that people receive the optimum support in our home. We will also be evaluating people’s quality of life and their experience of life in our home, as well as how our support benefits care-givers and the wider family.

We are consulting with health and social care professionals, as well as people with young onset dementia and their families, about exactly what this model of care will look like and how it will be delivered. Please contact Jane Norman, Director, YoungDementia UK Homes, if you would like to be involved in this process via youngdementiahome@gmail.com.