Reflections on Dementia

My mother died in December 2014. She was 94. She had a stroke, in the end but has struggled with dementia for 5 years before that.

Over the last 4 months as I have sorted through the paper and the processes that follow death and necessarily provide time for reflection, I have thought a lot about her, and about what I have learned as I watched her live with her illness and die. I am a GP. I understand the pathology. I have watched patients go through the same inevitable decline as an interested and concerned bystander but it is different when it is someone you love.
I saw the best and the least that the NHS provides.

I have felt proud and frustrated and angry at times.

These things I know:

Hospital is not a good place for people with dementia. So unless people really really need to be there – keep them away. The ground people lose when they are there away from the familiar and the safe is rarely if ever made up. Each time my Mum was admitted it didn’t matter how kind/ thoughtful/caring ( or not) the staff were she came home smaller than before she went in. Each time she had no treatment to speak of. The reasons for her admission were never clear and were usually more about the person sending her in than her.
So my advice to GPs, both in and out of hours , to community nurses , paramedics is- BE BRAVE –keep people at home if you can. Challenge the system. Don’t see hospitals as risk free places of safety if you aren’t sure. They aren’t! Admitting someone to hospital may make you feel you have done the safe thing but you critically underestimate the impact of your decision on their future functioning. In the end it has to be an assessment of the balance of risks. Hopefully if there are good domiciliary services in place keeping people like my Mum at home will be an easier choice.

Look for other ways to deal with aggressive behaviour don’t 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 wasn’t expecting them, 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 UNs aspirations for a fairer world, marched against intolerance of any sort, embraced family members who came out around their sexuality.. and yet when she was admitted a nurse on the ward stopped me and told me she was a racist. New carers complained she was rude and abrupt. She was frightened because someone who she wasn’t expecting came to see her and she said something inappropriate. She wasn’t 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 didn’t help. Asking staff to be on time, let her know who they were and why they were there, not crowding her,. making sure she had the same carers each day and not a parade of different people, that those who came in contact with her were given the tools and the training to understand rather than take offense.. made her aggression go away. Simple things aren’t they?

Help loved ones understand the process of dementia. It helped me to realise as Mums 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?” A question to me as someone she knew and felt comfortable with without any understanding of it 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 GP capable daughter…… but there were times …I found books to read… on line resources but some are better than others…. Someone to guide me through what they offered would have been helpful and I would have wasted less time.. someone to listen might have helped in the dark days and there were many of them…

Develop the extra care model We were so lucky 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, generous. They have to do tough stuff every day. They deserve so much more than minimum wage. The living wage must be the minimum mustn't it? Good carers keep people better, keep them away from hospital and out of nursing homes…. It is better for people and surely it can’t but save money…If we as a society value our most vulnerable people 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.

It is Dementia Awareness week. I read that dementia is now the number one cause of death for women and the fourth for men. My generation are witnesses to our parents struggle with the disease and I wonder how it will form and change our approach to our own care as we get older.