For National Dementia Carers Day, Hazel our Senior Supervisor speaks about her experiences of caring for people living with Dementia

My experiences of caring for people living with Dementia

In this blog I will discuss my experiences, the techniques I have found useful and the challenges you may face when looking after someone who is living with dementia.

I have no personal family involvement of caring for someone living with dementia, instead my experiences have been throughout my career in Community Care and Nursing.

The Simple, Everyday Things

I have met many people living with their dementia at the various different stages and many relatives who are, and have been, trying to come to terms with the condition. I have also supported and helped many who are in denial that it is happening.

It is sad to watch the person you have known prior to the diagnosis, progress through their dementia, until they need to be guided through every step of simple acts of daily living. How do we forget the simple tasks of rising from bed and going for a wash and how to dress ourselves?

For example, take yourself to the kitchen and go through the stages of making a cup of tea. It is so automatic, you feel like you could do it in your sleep. But, go back in and slow it down. Document each step, starting from recognising that you feel thirsty, finding the cup in the kitchen cupboard, identifying the kettle and selecting the cold water tap to fill it; it is surprising how many steps there actually are. Dementia isn’t just about losing your memory, it can affect cognitive processes and impair movement so what seems like such a simple every day task to us, could actually be very complex for someone living with dementia. 

Repetition, Repetition and Difficult Questions

In the company of a person who repeats and repeats the same questions or tells you the same story over and over again, is emotionally exhausting. It is sadly not hard to imagine how Carer fatigue, anger and frustration outbursts can happen, you sometimes just want to shout, “You’ve asked me that 100 times already today!!!” Getting angry or correcting will not change anything, in fact, it will probably make things worse. It is important to be patient but recognise the need for Carer respite and time away.

Similar to repetition of topics, what do we do if a person who is alone now after many years of marriage talks of their spouse or questions where their deceased parents are? It is often easier (on both the Carer and person with dementia), kinder and more sustainable, to not tell them they have died, as this will often be new news to them which they will be hearing for the first time. If this happens several times a day, every day they will understandably become upset and often very distressed. In my experience I have found that it is often best to say that they are at work and will be back later or they are just away for a while. Although this is not the truth, and can feel uncomfortable or difficult, it will help to placate them.

However, sometimes in these circumstances you can divert the conversation. Look around the room and ask about the pet/ grandchildren photographs on the wall. Some families are very good and make a photo album up of the person’s life through the ages, places they knew well and a little life history which can stimulate conversation away from a fixation.

It is important to remember that conversations can sometimes be very difficult so I just go with the flow generally.

Exotic Animals and Strange People

Hallucination can also be difficult to deal with. When I worked in a local Nursing Home, a resident would often see exotic animals in the garden. My response to this would usually be; “Wow how lucky we are!” not “Don’t be daft there’s nothing there”. Also, if a person living with dementia is hallucinating people in rooms it can be very distressing, I have found that if you go along with it and ask ‘the person’ to leave now, it usually works.

Confusion, Frustration and Upset

It is so difficult for relatives to watch their parent, spouse or loved one disappear into another world or person. One daughter found it hard that her Mother, living with dementia, confused her with her grandmother, calling her ‘mother’. Every time, the daughter corrected her, saying “no, I’m your daughter”. The situation would end up in a very distraught visit, with both being upset. Whilst this is difficult, it is important to try to let it wash over your head. Talking about the lady's home town of Penarth and a cup of tea usually settled her.

Singing and Music

I have also found that singing and music is often helpful to the person and us as Carers, as it can evoke strong memories, utilises cognitive function and provides relaxation. Why not ask your relative or loved one what their favourite songs are and what happy memories they have of those songs? You can then create a happy playlist that can be played during visits to stimulate conversation or help provide distractions.