I had the joy on Wednesday of taking part in a live webinar hosted by RBS for their staff entitled “Dealing with a Dementia Diagnosis”
Max Pownell, Founder and Director from Carecalls CIC, www.carecalls.co.uk and I chatted about the things that people affected by a new diagnosis may find helpful to know. Max’s social enterprise has all sorts of genius technical solutions for living independently at home.
I thought as I made my way through the countryside on the train home that the links I recommended would be really useful to share with everyone.
Dementia is not an inevitable part of getting older. All of us can expect to get a bit more forgetful as time goes on. All of our brains will be starting to shrink as we grow older. This means that we may not find words as easily as we used to, or we may become a bit more forgetful. This is normal.
It is not normal though when forgetfulness, getting lost in familiar places or consistent word-finding difficulties get in the way with normal functioning in your every-day life.
Dementia is an umbrella term that covers many causes. Alzheimer’s is the most common (60% of all dementias are caused by Alzheimer’s)
All dementia’s affect common areas including memory, calculation, thinking, language & orientation to time and place.
Dementia occurs when there is damage to the brain that is caused by either a disease or condition that is progressive.
Understanding the type of dementia that has been diagnosed will help you to be able to find out more about the symptoms you can expect.
Early diagnosis is important because it means you will be able to plan ahead and make important decisions about how you would like things to be in the future.
So here are the links I recommended today:
Alzheimer’s Society
A good place to start to look for more information on the different types of dementia and what to expect is the Alzheimers Society www.alzheimers.org.uk There is a multitude of factsheets that you can read on different aspects of dementia. They also have a National Dementia Helpline 0300 8886678 and Their online forum ‘Talking Point’ is a great place to meet other people who are affected by a dementia diagnosis and there is lots advice to be had from those that have been through it. The Alzheimers Society also has a free publication called Dementia Together which is worth signing up for.
Admiral Nurses
Another great organisation is Dementia UK www.dementiauk.org Here you can access advice from specially trained dementia specialist nurses called Admiral Nurses. You can find out if there is an Admiral Nurse in your area. Admiral Nurses are there to support families and loved ones who are caring for people living with dementia. They also have a National helpline and the helpline is run by qualified and registered nurses who will be able to advise you. 0800 8886678
Other people in the same boat
A common occurrence for people living with a dementia is that it is often hard to get your voice heard due to the symptoms you may be experiencing. I can highly recommend getting involved in your local DEEP group. DEEP stands for Dementia Engagement and Empowerment Project. The groups are made up of people living with dementia who are active in having a say on important issues that affect them. You can find your nearest group here www.dementiavoices.org.uk
Under 65
For those that are experiencing young onset dementia, (those under the age of 65) there is a great organisation called young dementia UK www.youngdementiauk.org The issues that working-age people face when living with dementia can be different to retired people. It is important that you and your family know how to navigate this different landscape and so I recommend getting connected with this organisation who can support you.
Research anyone?
If you or someone you know is living with dementia they may well wish to be involved in cutting edge research. www.alzheimersresearchuk.org is the website to go to if this is of interest. It is also a great place to get statistics and find out more facts about dementia. They have also produced a virtual walkthrough of what it may feel like to have the symptoms of dementia which can be downloaded on to your phone https://www.alzheimersresearchuk.org/campaigns/awtd/
Activities
Finally, if you are wondering what activities may work for people living with dementia, the most important thing to think about is who they are, and what they have previously enjoyed. You may need to adapt activities so that they can still be engaged with eg. Someone may have loved knitting but due to their symptoms may not be able to knit anymore. Try winding wool instead. This muscle memory is likely to still be accessed. Forget thinking of activity needing an end result and instead think about engaging in the moment. Simple things like peeling potatoes can be accessed well into the progression of dementia as it doesn’t need conscious cognition to do. If you would like ideas for activities to buy check out Active Minds www.active-minds.org
These robotic companion pets may seem strange but I have seen some wonderful responses from people in the mid-later stages of dementia. https://www.alzstoreuk.com/about
Laura Walker is Co-founder and Director/Joint CEO at Memory Matters South West CIC which she co-runs with her sister in law Kate Smith. Both are former nurses. Memory Matters is an organisation that helps people living with dementia to thrive in their community. Memory Matters have a city centre reminiscence café in Plymouth designed by people living with dementia and open to everyone. www.moments-cafe.com All profits made from the café are used to fund the information, support and therapy we provide in communities in the south west. Memory Matters www.memorymatterssw.co.uk also provide training and coaching to organisations, health staff and families affected by dementia.