Supporting People Living with Dementia in Extra Care Housing

We have just started a really exciting new project! So what’s it all about? Let’s hear from the project team and find out.

The Project

We are interested in finding out more about how the different models of Extra Care Housing support people living with dementia.

What is Extra Care Housing?

Extra Care Housing is a housing option that many older people are choosing as a lifestyle choice, either proactively or because they have immediate care needs. Extra Care Housing gives people the opportunity to live independently in their own home, typically an apartment within a complex. There is care available, usually onsite, but people can choose whether or not to have this care and how much care to have. There tend to be other facilities available at the complex which can include activities, a gym, a hairdresser, shops, cinema, library, restaurant or café, launderette and sometimes even a spa! A big attraction for moving to Extra Care is having the freedom to pick and choose from what is available, to make friends and to stay connected to a community. In this sense, many Extra Care Housing complexes are within towns and near to local shops and facilities.

So why are we interested in finding out about Extra Care support for people living with dementia?

As Extra Care Housing has grown in popularity, a number of different models have emerged. In some complexes, people living with dementia are mixed in amongst other residents in a ‘pepper pot’ fashion so that no one would be aware of who had dementia and who didn’t simply by knowing which apartment they lived in. Other schemes choose to have a separate ‘wing’ or ‘section’ for people living with dementia so that they are not mixed in with other residents. Some complexes have been designed solely for people living with dementia so there are no residents who don’t have a diagnosis.

We know that Extra Care Housing can have real benefits for residents but we are not sure how people living with dementia experience this type of housing and which model works best for them.

How are we going to find out what works best?

We are going to start by looking to see what other people have said about Extra Care Housing to help us understand the landscape.

Next, we are going to do three big surveys to ask the experts! We will send one survey to people living with dementia in Extra Care Housing, another to family carers who are supporting someone living with dementia in Extra Care Housing or who may themselves by living there as well, and finally we will survey to people who commission Extra Care Housing – those who provide it! We will be asking them what they think are the benefits and challenges of living in their type of accommodation.

Once we have a better understanding of what’s out there and what people think of their Extra Care Housing, we are going to be selecting nine sites to work with.

How will we choose our nine sites?

We want to find out about the three different models of Extra Care Housing so we are going to choose three of each: Integrated (living all mixed up); segregated (a separate wing); specialist (just people living with dementia). Having three of each type will allow us to look at rural areas, urban areas, diversity of different populations, etc. and get a really good overview.

What sort of things will we be doing at the nine sites?

We are going to be talking to people who live there to find out what it’s really like. This will include people living with dementia and other residents who live there. We will also be talking to staff at the sites and people who commission the schemes. This will help us understand what is provided there and how it’s allocated and paid for.

What’s really important to us?

Listening to people! We really want to hear what people have to say about living in Extra Care Housing and how this can make a difference to them. We are going to be offering people living with dementia the opportunity to do this through making a video diary of themselves. This is a great way to capture their experiences and we are really hoping that people will enjoy doing this.

What will we do with the information?

In 18 months when we have all our information, we are going to share this with people in a range of different ways. We are going to be creating a series of booklets for all the types of people who have taken part and who can benefit from the information. So there will be three booklets: one for people living with dementia, one for family carers and one for commissioners. Next, we are hoping to collect all the video diaries that people with dementia have made and put these online as short films and insights. Finally, we will be doing some presentations to share our discoveries and also articles for professional journals.

If you are interested in finding out more about our project or would like to be involved, please contact either Teresa Atkinson t.atkinson@worc.ac.uk or Becky Oatley r.oatley@worc.ac.uk and we will be delighted to tell you more.

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow. Posts relating to this project will use the hashtag #DemECH