Welcome to the third of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.
Day 3 – Prepare to be surprised
Ask most people what they think living with dementia would be like, and they assume it’s a life of inability and dependence. Those of us who know otherwise just want to scream, “People with dementia can still do things!”
More importantly, people with dementia still WANT to do things. Stepping in and doing everything for them, without stopping to consider, asking or trying to see what they can do themselves removes their independence, and is actually likely to make their deterioration with dementia more rapid.
An example of this is my dad in the later stages of his dementia. To a casual observer he was incapable of doing anything. Most days he needed to be helped to eat, but some days he could, when encouraged and not rushed, pick up the spoon and feed himself. You might think, what’s the point? Just do it for him. But by doing it himself he proved that not only did he have the ability and dexterity, but most importantly of all, he had the desire to fuel his body to keep going.
So next time you are with someone who has dementia, give them the opportunity to surprise you. Allow them to experience achievement, and when you talk to them, let them know the joy of being praised.
Next post on 22 May 2013.
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5 thoughts on “Let’s talk about dementia – Surprises”
As a student nurse we were recently given a lecture by individuals living with dementia who were sharing their experiences with people who could benefit and draw from what it's really like to be living with dementia, they said it gave them something to focus on other than having dementia and also enabled them to continue contributing to society. I found this experience invaluable and it's something I will never forget. Who better to advise you on dementia than those who have actually experienced it first hand. This blog is so insightful and is also invaluable to anyone who wants to expand their knowledge in this area, especially as there seems to be so much confusion/misconceptions regarding dementia.
The other thing to add to this is that people with Dementia can still contribute to society. My mum who is only 66 with early onset dementia wants nothing more than to feel important and necessary. Fair enough to. For her, as someone her cared for people all her life – as a midwife, nurse, counsellor and community worker, mother, wife, aunt, friend and everything else between she still wants to do is contribute. We need to enable legitimate and managed ways for people with dementia to contribute and have it recognised.
My Mum is unable to participate in much as her mobility and her motivation is poor but I always praise her wherever I can and hope that I am not patronising. We do have an occasional joke about the way roles have reversed. It is good to be able to share a laugh and mum is still able to poke fun and make a joke herself at times.
There is a gentleman who lives at my Mum's CH who still climbs trees to prune them – he's 90, has always loved gardening. His family accept the risk but want him to carry on doing the things he loves. Brave family, brave CH.
So true! I would also add that people with dementia can also be supported to do things, even if they cannot 'achieve' by carrying them out effectively. My wonderful mother-in-law was the sort of woman who never sat down, always cooking, cleaning and looking after others. It was part of her identity. She gained satisfaction, well-being, and demonstrated her love for others through these activities.
The Day Service she attended listened to us and understood, and encouraged her to dust or wash up long after she'd lost the ability to carry out these tasks 'properly'. They also accepted that she would not sit down at mealtimes unless everyone else was (including the staff). They always thanked her for her help, and she glowed with pride.
Later, when admitted to a residential home, she forgot about tasks, but the drive to be up and about was still strong, and there were problems with care staff trying to get her to sit down. Some hadn't been shown the Person-Centred guidance we had written, or been told anything about her past, so genuinely didn't understand she was never the sitting down type! Others did know, but didn't follow the guidance…but that's another story 🙁
My messages to any staff reading this are
1. When the ability or need to achieve seems to have disappeared, activity remains important to the physical and emotional well-being of people with dementia, especially if they have been very active in the past, and
2. If you are committed to caring with respect and compassion, use every opportunity to get to know about the person's past and to link it to what is going on now for the person.
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