Is it possible to be contented if you have dementia? More importantly to me, can my mother be contented with dementia? The main reason I started this blog is to record my learning as I attempt to implement a method developed by the Contented Dementia Trust to improve the quality of life for my mother. Hopefully, it will do what it says on the tin. A big ask, I know.
According to their website and the filmed case studies, Contented Dementia has already had an enormous impact on many people. So, for my first blog post I describe some key elements of the programme.
Contented Dementia, previously known as SPECAL (Specialised Early Care for Alzheimer’s) is a methodology for developing a plan to support the wellbeing of the person living with dementia. Originally intended for family and friends to implement while the person is still at home, it has evolved so that it can also work in a care home setting too. So, what is it?
Penny Garner, the woman behind Contented Dementia, devised a great way to help people understand the impact of dementia on memory. A ‘Photograph Album’ is used to illustrate what happens to a person with dementia. Each of us carries around our own photo album of memories, and each photo – or each memory – is made up of facts and feelings. People with dementia progressively are unable to log the facts and information about what has recently happened, so they acquire photos which are associated with feelings but no facts They look further back in their albums (early memories) to find facts which make sense of what’s happening to them now. As the ability to hold new facts diminishes, the person becomes more dependent on, and sensitive to, feelings which replace the facts of what has just happened.
Three golden rules
There are lots of rules and principles behind the Contented Dementia plan. But let’s start with the three golden rules:
- Don’t ask direct questions.
This is a difficult one because the foundation of most social interaction is doing just that, asking questions. The problem is that questions may cause distress, as it reminds the person with dementia about their lack of memory – and they may simply not have the information available to give a response. Yesterday, someone in my mum’s home asked what she had for tea minutes after she finished eating. An innocent enough question, but as my mum couldn’t remember what she had for tea, it was potentially the source of embarrassment and anxiety. This type of question unwittingly contributes to the constant assault on my mother’s self-esteem.
- Listen to the expert.
Listen to the person with dementia, and respond in ways that will make sense to them, and their ‘photograph album’. Particularly, listening to questions may reveal what is worrying them most. Your job is to see if you can find an answer that is acceptable to them, and then use it every time. I love this example from the contented dementia website. “My mother kept asking where the dog was. I tried over and over again to explain that the dog had died. Then I went on a SPECAL course and decided to try saying that the dog was fast asleep. She sighed with relief. It was just a different answer, that’s all, but it made such a difference.”
- Don’t contradict.
In my case, this means allowing mum to believe that she works at the home, that she is taking care of others. In fact, she is taking care of others, so it’s not so far- fetched. She is making sense of her situation, by drawing on her early memories of working in a hospital.
Allowing my mother to believe this, is far better than what I saw a care home worker do a while ago. There was bingo going on in the lounge, and a male resident asked where the slot machines were. The carer said, ‘There are no slot machines. You are not in an amusement arcade, you are in a care home. You have been here for 18 months.’ On the man’s face, I could see the unnecessary distress that this brutal contradiction caused.
Don’t get me wrong, the care workers at my mum’s home do an amazing job. I am so completely grateful to them for the care, love and patience they show every day. The women and men who care, cook and clean are quite literally real-world angels. They have also been helping to implement the contented dementia plan.
Having read the book, done the introductory ‘Family and Friends’ course (with my husband whose in the picture above, and sister) and then attempted to design a care plan, I am still not sure if this method will work for my mother. Right now she is a long way from ‘contented’.
I am having another go at developing a plan based on recent feedback from the Contented Dementia guru and inventor, Penny Garner, so watch this space…