No assumptions, just relationships

In this guest blog Jane King, a front line adult social worker and researcher, tells us about the importance of relational practice with people living alone with dementia. 

Over the years, the people I work with have taught me that every journey with dementia is unique. Assumptions must not be made about that journey and possibilities must not be limited, just because a person is living on their own with dementia or based on what someone else thinks is best for them.

The first time I ever worked with a person with dementia, it was with a 92 year-old woman who was a retired school teacher and had lived on her own for many years without family or friends nearby. Like most of us, she wanted to continue living at home and, as her social worker, I arranged a care package of daily support along with a fortnight’s respite break in a care home every 2 months so she could build herself up.

At the end of each stay, I asked her if she wanted to stay at the care home or go home. She always wanted to return home where she lived for another 3 years before dying aged 95. Throughout that time, I visited regularly, in what you might call a watching brief. If she had been living with someone else I would have ended my involvement as soon as the services were in place.

As time went on, she didn’t know exactly who I was, but as we had a relationship already, she felt a sense of familiarity when I arrived and was always glad to have my company.

I was also her history keeper, making sure others knew where she had come from, her preferences and that she was seen as a whole person, not just a collection of social care and health needs. This is something the Living Alone with Dementia guidance talks about. It recommends using the This is Me document which I have found helpful.

Image from the Centre for Ageing Better’s Age-positive Image Library

I am so glad to have had this experience as my first example of working with a person who has dementia. Since then, I have known that with the right support and in the right circumstances people with dementia can live on their own at home, even if the illness becomes more advanced and they have limited informal support. I have also learnt that health and social care professionals can be quite risk adverse to this idea, but our goal should be to support people in the things that matter to them wherever possible.

My experience has also taught me that the chances of maintaining choice and control are increased by engaging with support and services at an early stage, rather than when something has gone wrong or a person’s dementia condition has become more advanced. The great thing about this new guidance is that it teaches professionals to take a proactive approach to working with people living alone with dementia, using feedback and ideas that have come from lived experience.

The guidance highlights a partnership model of working, where people living with dementia on their own, may need that extra support to make sure they can access opportunities, services and the chance to live fulfilling lives in their own homes. It is a model about working with people who have dementia to make their own choices rather than taking over. And it is a responsive model that recognises that support needs will vary over time and that it is important to maintain contact and keep the door open.

I would like to say a big thank you to all the people living alone with dementia who contributed to this research and the making of these materials. I would also like to thank the researchers who talked to people like me who work with people with dementia and are brimming with ideas to share. As a 3-way partnership, all of us together have come up with this guidance, which as far as I am aware is the first of its kind.





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