Today I was at a free dementia workshop run by Home Instead care company. It was really informative, helpful, and great to be surrounded by other people who are caring for loved ones with dementia. I have quite a lot of information to get through so apologies if this post is quite long. The workshop covered the symptoms and diagnosis of dementia, the technique that Home Instead use called Capture Life’s Journey, techniques to manage behaviours and activities to encourage engagement. This post will just cover the basic knowledge. I will then post separately for Lifes Journey, managing behaviours and activities.
First a brief note about Home Instead. They currently operate in 16 countries and specialise in guiding and caring for those with dementia. It seems to be a lot more individualised care, and more focused on what the “client” needs, rather than the drop in service provided by others. It may be worth looking into their services if they are available in your area and you feel you need more support, either for yourself or your loved one.
Some surprising statistics I learned today; 800000 people in the UK are currently diagnosed with a form of dementia, by 2021 this is expected to rise to one million! And that is just the diagnosed cases, there are still many people out there unable or unwilling to get diagnosis. One in 6 people over the age of 80 could get one form of dementia. Causes for dementia are still unknown but it is believed that anything that causes trauma to the brain, head, heart and blood could affect a persons susceptibility to dementia. Which makes sense as it is the misfiring of the brain, and lack of communication between brain cells and the rest of the brain & body, so anything that could cause harm to these cells would be a possible link to dementias.I also learned today that a healthy brain weighs 2lb (actually quite heavy, but not where I would like to lose my weight from), a brain with Alzheimers/Dementias weighs just half of that, 1lb. This is down to the death of cells in the brain and loss of tissue.
62% of the 800000 people in the UK diagnosed with dementia were diagnosed with Alzheimers (caused by problems with chemicals in the brain, affecting recall of names etc), 17% with vascular dementia (caused by problems in the blood, not dissimilar to Alzheimers), 10% with a mixed form of dementias (commonly Alzheimers/Vascular), 4% with Lewy Body Dementia (caused by irregularity in brain cells, affecting physically e.g. tremors/stiffness), 2% with frontotemporal dementia (caused by cardiovascular diseases & problems, affecting behavioural changes).
Symptoms of dementia vary greatly, and it is very important not to self diagnose, or diagnose a loved one, just from something off the internet. Hence why I will not be posting the symptoms here. If you are concerned a loved one may be suffering with signs of dementia you should try and convince them to see a GP and get referred to a memory clinic. It is my personal belief however that a diagnosis is not always necessary and could just upset the patient more, but again that is an individual choice, because there is no cure, just medication that *might* slow some symptoms down.
During the workshop we did an activity that demonstrated the harsh realities of dementia. It may be worth doing this with family members who do not understand what is going on with their relative. Each person has 5 pieces of paper and on each sheet of paper writes one thing that means a lot to them e.g. car, music, family, pets, cigarettes, chocolate. Then fold the paper up and shuffle them. Hand one piece of paper to the person on your left, they rip it up. One to the person on your right, they rip it up. One to the person in front, they rip it up. One to the person at the back, they rip it up. The one thing you are left with is the thing you get to keep. It resembles the one thing that the person with dementia may be able to remember e.g. their wedding day, a family member, a pet. Everything else gets taken away from them without their say so. You or I could choose to give up any of the things that matter to us, but imagine not being able to make that choice and having it all taken away anyway.
One thing that was highlighted quite frequently throughout today was that people with dementia should be able to live freely as humans, with human rights as they are still the person they were before. Unless any of their behaviours put themselves or others at risk. Some of the behaviours displayed by someone with dementia include
- delusions – e.g. hiding a purse and then being certain someone has stolen it
- wandering – believing they need to be somewhere or with someone
- refusal – pride & lack of acceptance, denial of condition and why the carers are around
- aggression – frustrated they can’t do things.
- Repetition – doing something because they know they can, over and over
- agitation – usually caused by changes around them
- sexual inappropriateness – not understanding taboo subjects or social situations
- false accusations – e.g. blaming you for stealing the purse
The important thing with dementia is treat the patient with respect and dignity, as they are still the person you love, with rights. They are still the person you have a relationship with, but now there is an added factor to your relationship (like I mentioned in a previous post, it is important to have the person you love, in my case nan, and the dementia version). This does not mean you treat them differently while they are displaying the behaviours of dementia but it helps to reassure you that the person you love is not the one “attacking” you, it’s the dementia.
The other common theme from today was take care of yourself too. If you focus too much on your loved one you forget yourself, and this can be detrimental to your loved one as well as your own well being. So don’t forget Eat Healthy, Drink, Exercise, Sleep, Relax, Socialise and make the list of why you’re amazing (I bet some of you still haven’t). I know it’s not that easy to do all/any of the things in the list, but you really must make time to do some. It will really aid the caring process you are going through, and make each day a little easier.
I’m looking forward to writing about the Lifes Journey, as I have already tried some of out with nan. However I’m afraid I’m too tired to write any more (I forgot how exhausting learning was!) I promise it will be up tomorrow.
Thankyou for reading and sharing and taking part in dementia awareness week.