Our Residents have been our best teachers….

What does it feel like to have dementia?

Dementia touches so many lives. There is no way to really predict who will end up having to live with this dreadful disease. It hits every socio-economic, ethnic and age group, affecting men and women alike. And what havoc it creates! We know it robs people of their brain functions we just don’t know exactly which ones and to what extent.

It is really difficult for families to understand what is actually going on when their loved one - who has been diagnosed with dementia, starts to behave differently. This can be very challenging both for the person living with dementia and for their carers.

Families and friends of the Devonshire have asked us to share the knowledge we have gained over the course of more than 30 years of caring for those living with dementia. So we have decided to include our ‘Lessons Learned’ in the Devonshire’s monthly newsletter.

Over the years, Residents entrusted to our care have shown us how it feels to live with their dementia. I remember late one evening I was using an old fashioned adding machine when one of my Resident’s shuffled over to me. She came and stood by my desk. I greeted Anita and she responded with a sad smile. Then she said, ‘I used to do that till the lights went off in my head!.’ Anita used to work at a bank in Central London as the Assistant Manager, and the image she conjured up of ‘the lights going off in her head’ really helped me to have empathy with what dementia must have felt like for her. Scary and debilitating!

Dorothy, a retired schoolteacher, in the early phases of her dementia used to have occasional moments that were quite lucid and clear. During one of these moments, she told me ‘I know there is something dreadfully wrong but I don’t know what!’ She went on to explain, ‘Sometimes it feels like everyone is talking in a foreign language or all at the same time and I have absolutely no clue what they are saying or wanting me to do. I don’t even know who they are.’ Dorothy could not tell me how she felt when she was first diagnosed with dementia as that memory had been obliterated. However, she had hung on to this emotional feeling that I was able to witness, as she shed some tears in her sadness and frustration.

Coping with Dementia as a Family

We have learned from over 30 years of experience that many families are completely overwhelmed by the diagnosis of dementia and at a loss as to how best to care for their loved one. Panic begins to set in. How are they going to cope? Followed by anxiety, worry and many sleepless nights - what is going to happen? This is especially true when personality begins to change (this can take place all of a sudden or it can happen slowly over time, depending on the type of dementia) and when behaviours become impossible to understand. In the meantime the person actually living with dementia is feeling horrible, experiencing a bewildering reality that they are struggling to understand. They might also be extremely frustrated because they are loosing their ability to carry out normal, everyday tasks and alongside this, are losing their independence.

Our Wednesday community coffee mornings are free and offer an ideal time to come to the Devonshire for a cup of coffee and a chat. It can be an opportunity to share experiences with others who are in the same boat and exchange ideas on how to face the challenges of caring for their loved one. We also host a singing group for those diagnosed with dementia that takes place at the same time as our coffee morning.

At a recent Residents Advocate group meeting, we introduced some of our families to a training workshop that we carry out for our staff. The workshop simulates a virtual experience of what it feels like to live with dementia. Our families told us that they wished they had received this kind of information when their loved one was first diagnosed with dementia. They told us that the workshop had really helped them to better understand the personality changes as well as some of the behaviours caused by the disease. It helped them to think about what types of changes might happen in the future and to consider how to help their loved one. It highlights what the families can do to reduce the challenges and difficulties that the person living with dementia would eventually face, showing them ways in which they could keep their loved one independent and safe for as long as possible.

Most of us have no idea what it feels like to live with dementia. The virtual dementia experience helps us to gain a new perspective on living with dementia. It helps us to understand what the triggers are and how to reduce anxiety and stress by taking away the things that cause them.

Depending on how the dementia has developed, small things like speaking slowly and clearly, allowing the reading of your lips, approaching the person on their dominant side (right handed person from the right), using touch, making sure your body language is appropriate, using repetition and walking a bit slower can have a huge impact on daily family life.

Understanding that changes in personality and behaviour are not deliberate, that rather it is the dementia that is robbing the mind, can go a long way towards diffusing emotional exhaustion and despair. This kind of knowledge is an extremely valuable element of the toolbox that families need to cope with dementia.

How do we know what a person with dementia experiences?

Our sensory virtual dementia experience is based on the physical and cognitive challenges that older people living with dementia actually experience while going through the tasks of their daily lives. We have spent 30 years observing and assisting our Residents walk, talk, and with personal daily living tasks. We have tried different approaches to enable them. The props created for the virtual dementia experience alter the senses, mimicking the process of aging while also instigating the kinds of triggers that we have observed affecting changes in behaviour. These props are also based on research by clinical geriatricians from all over the world, as well as on what we have heard and seen at the Devonshire while providing care to Residents living with dementia.

We believe the disease of dementia is a progressive disability; one that once understood, can be successfully managed.

The views presented in this article are based on our own experience, observations, dementia mapping and clinical research from around the world. They are 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 degree from the University of West London for her work in dementia.

We hope you have found this article helpful. if you have any questions please send them through to us on annar@devonshiredementiacare.com