Getting others to sit up and listen

A great example of how this woman’s one-page profile has made people sit up and listen when she says what she needs.  Doreen experiences dementia and often felt threatened and confused by her interactions with support staff. They now understand her well and know how to support her in a way that makes sense to her.

Written by Gill Bailey

Doreen PicIf you do not know that you have dementia, and once the disease advances you may not be aware, what would it feel like to be approached by someone offering support? Imagine you are sitting in an armchair and a person you don’t know or recognise comes up to you and tries to stand you up to walk you to the dinner table to eat. I can only imagine how it must feel to someone with Dementia but understanding this is the first step to approaching support differently.

Doreen doesn’t know that she has dementia.  She is 79 years old and lives in a residential service supporting 44 people who also live with dementia. She is described as someone who ‘restores your faith in human nature’’.  Doreen is a gentle lady who was always at the heart of her church community until her dementia progressed.

Over the last eighteen months we have been introducing one-page profiles to people living and working with dementia. The team worked with Doreen and her husband Clifford to develop a one-page profile. They learned to pay attention when Doreen told them she was becoming frustrated and wanted her own space. From the details written on her profile they understood that this meant that she needed to be supported to find a quiet corner or to go to her room. Understanding what ‘best support’ looks like from Doreen’s perspective has made a huge difference to her happiness and wellbeing .

Obviously there was information held in Doreen’s care plan but you get a very different understanding of who Doreen is from her one-page profile. The organisation has put a lot of effort into their care plans and they do contain some good person-centred information but crucial information about Doreen was  scattered across 60 pages of mainly clinical notes and assessments plus a page of  ‘likes and dislikes’.

From Doreen’s one page profile we learn that she enjoys talking to Winifred and Kathleen and that she gets upset if she is ignored; knowing this helps staff to encourage and support these relationships.  We learn that Doreen likes to get up in her own time, between 8am and 10am in the morning. She used to be rushed in the mornings but now that this information has been shared she is left to rise at her leisure.  As well as a personal change for Doreen, this is a shift in culture from a once largely task focused organisational culture to one that is based on relationships and deep understandings of individuals. This is one of the great advances that has come out of introducing one –page profiles where Doreen lives.

Doreen now has greater choice and control in her day-to-day life. The staff that support her know how to do it well and anyone new to Doreen can quickly learn the important information about her from one single sheet of paper. For Doreen it means she isn’t as confused or frightened about where she is and what is happening to her – instead she dictates her own routine and stays connected to her life before dementia by doing the things that she always has, like baking, reading the newspaper and seeing her grandchildren.

Doreen’s story features in a newly published book by Helen Sanderson and Gill Bailey called Personalisation and Dementia available to order from HSAPress.