Viewpoint: Lessons for the NHS when dealing with dementia patients

My experience of my mother living with dementia for five years has given me an insight as to what we as carers need to do differently.

The first point is that hospital is not a good place for people with dementia – and I’ve dealt with that in a separate article.

The other important lessons are these:

Look for other ways to deal with aggressive behaviour  
Do not reach for the prescription pad. It took me a long time to realise that if my mum was aggressive it was usually because she was frightened. What frightened her? New people, too many people all at once, people coming when she was not expecting them, and not coming when she was.

Help care workers understand. When my mum was unaffected by dementia she was a tolerant, educated woman who lectured me about internationalism, delivered United Nations days in schools to help young people understand the UN’s aspirations for a fairer world, marched against intolerance of any sort, embraced family members who came out around their sexuality.

Yet when she was admitted, a nurse on the ward stopped me and told me my mum was a racist. New carers complained she was rude and abrupt. She was frightened because someone who she was not expecting came to see her and she said something inappropriate.

She was not a racist but she grew up in a white world and when that environment was all she was able to remember, anything else was frightening to her. Medicating her made her sleepy and more disorientated and it did not help.

Staff needed to be on time, let her know who they were and why they were there, not crowding her, and making sure she had the same carers each day. Those who came into contact with her needed the tools and the training to understand rather than take offence. Simple things, aren’t they?

Help loved ones understand the process of dementia
It helped me to realise that as mum’s memory failed that it wasn’t that she forgot me but she forgot the architecture of her life. I have a grandson who is now nearly a year old. One day I visited my daughter and Artie and as I walked in he beamed at me. It was a ‘hello I know I know you’ smile.

He didn’t know I was his gran but he knew I was familiar. I then went to see my mum and the smile was the same. She didn’t know I was Vicky her daughter because just like Artie she didn’t know what a daughter was anymore.

When we took Artie to see her she turned to me and said ‘did I have babies?’ This was a question to me as someone she knew and felt comfortable with, without any understanding of its possible implications for me. It helped me to understand those things, however sad.

I was not offered any support from anyone, ever. Maybe people just saw the capable GP daughter but it would have been helpful for someone to at least guide me through what advice was available in books and online – and someone to listen to me might have helped in the dark days, of which there were many.

Develop the extra care model
We were so lucky that my mum was living in an area where extra care was well advanced and they have developed the model to include people with dementia. It meant she was in her own ‘home’ and never had to go to a nursing home. I am certain it meant she lived better for longer, surrounded by the anchors of her past, even if by the end she didn’t recognise what they were.

Pay carers properly
It is an amazing thing they do. The best are kind, patient and generous. They have to do tough stuff every day. They deserve so much more than minimum wage. Good carers keep people better, keep them away from hospital and out of nursing homes. If we as a society value our most vulnerable people, then we must value those we charge with caring for them.

Support families to allow their loved ones to die at home, if that is what they want to do
We look back on the week my mum had at home after her stroke and before she died with a sense of calm achievement. We did a good thing. Together we loved and nursed her and said our goodbyes. It was intensely emotional. It was made possible by those who gently and quietly supported us. I will always be grateful. It helped us with the grief of losing her.

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