WHAT OUR RESIDENTS HAVE TAUGHT US...

The views presented in this newsletter article are based on our own experiences, observations, learnings, dementia mapping and clinical research from around the world. They are all the opinions of the author, based on over 31 years of experience working with people living with dementia. Annar Mangalji has been awarded an Honorary Doctorate from the University of West London for her work with dementia.

In 1990 I had the privilege and honour of meeting and training with Tom Kitwood, who at the time was a professor at the University of Bradford. I believe he was the first person who advocated a psychosocial model of care to look at the brain changes of dementia rather than the traditional medical model. In simpler terms... getting to know a person instead of focusing on the diagnosis.

Tom Kitwood said: “For a person with dementia who is losing their memory and trying most of the time to make sense of who they are, a life story book can be an atlas, the compass, the guide to finding their self.”

His foresight and passion inspires me still to this day. It gives us all hope and a focus to start our journey to understand dementia.

One of the foundations of our care at the Devonshire is the life story book. We are privileged to hear and be part of the story. We find out who a person is and how unique their lives have been.

We start with an exhaustive number of questions at pre-admission and we try and understand what is going to make this person flourish at the Devonshire and how we are going to create experiences and moments of joy. We use the information families give us as a starting point to determine what our new Resident’s preferences are, what their needs are, and we focus on what their abilities are.

We create an individual care plan, which is a living care plan, as it grows over time as dementia progresses and needs and preferences change.

We also try to ask the more difficult questions. Besides the chronological highlights of a person’s life, we also need to know about the difficult times. Knowing how they coped in sad and distressing times, what comforted and reassured them, what made them feel valued. We ask these questions so that we can determine how to respond in the right way and provide the right care. Each person is so different and it does matter. We watch and listen to the things that are not said. This is the detective work we are all so proud of. Our staff are getting so good at cracking the code of each person and when that happens there’s real magic in the interactions. I see Residents’ eyes light up and such absolute joy on their faces.

When Veronica came to live with us at the Devonshire I was over-confident, actually very smug, as I had worked with her for 18 years and thought I knew everything about her.

Well, there were days when I was perplexed by her behaviour and I realised that I obviously didn’t know it all. There are times when I wish I had asked her more. Families can fill in the gaps but it’s really their version, their perception. I’m not so sure my family would be able to tell my story in a ten minute conversation.

We each need to prepare for our sunset years better. Most of us arrange our affairs, choose a person to have power of attorney and write our wills but maybe we also need to write down some of the more personal stuff that will help others care for us better when we are troubled. Just something to ponder about...

Families help us with our Residents’ life story books and we have one for each Resident, and for the Residents whose families cannot provide us with any details of their younger days, we have improvised by using pictures of villages they grew up in or seaside towns that they visited, as well as photos of occupations similar to what they used to do and anything that will trigger that long term memory spark.