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Dr. Allison Lamont, Brain and Memory Foundation.
Joan was upset.
She explained that her best friend, Anne, hadn't been herself for months. Anne had missed their regular lunches together on more than one occasion, and last week had stopped in the middle of making a cup of tea, totally confused about what she was doing. Eventually, she was persuaded to go to the doctor and now the news – Anne has Alzheimer's. Joan asked for my advice "What can I do for my friend? What can I say?"
Have you had this experience? Have you had a friend or relative diagnosed with Alzheimer's or one of the other dementias?
First and foremost, Anne is still Anne! She is now Anne who has to deal with Alzheimer's, something we are all a bit afraid of. Did you know that in surveys carried out by both the Daily Mail (UK) and the Marist Institute for Public Opinion (USA) the greatest fear for people over 65 is dementia – it is feared more than cancer, and even death itself? Perhaps this reflects the erroneous thought that people with dementia, within a very short time, change beyond anything we could imagine.
Now that Alzheimer's (and other causes of dementia) is being diagnosed earlier in the disease's progression, it may well be that the most outward sign of Anne's Alzheimer's is the memory problems. Yes, it is a progressive disease, but that progression is not the same, either in the 'order' things happen, or the speed with which progression happens, is not uniform at all.
This makes it all the more important to support our friend or relative – not to treat them as incompetent or 'different' to the person we knew prior to the diagnosis.
So what can Joan do for Anne?
In the course of my work I speak to many people who are in the earlier stages of Alzheimer's. They speak of the need for their friends to treat them 'normally'. First of all, assure your friend of your lasting friendship – that you will not be one of the 'disappearing friends' who are, sadly, all too common when dementia is apparent. When someone is diagnosed, then they are in desperate need of people about them who will stay the distance – and it may be for many years. Meet with your friend for lunches etc just the way you always have. Reminisce about the good times you have shared – keep those memories alive for your friend.
Acknowledge the diagnosis. It is all too easy to pretend everything is normal rather than confront the uncomfortable truth. If Anne cries, cry with her. Then dry the tears and assure her you are right there whenever she wants to talk about how it is for her. Help her keep other relationships alive. If you used to meet with other friends, continue to do so.
Have fun together – store up good memories.
Help your friend's caregivers – it is a wonderful gift you can give both your friend and her/his carers. Let them have time out to do shopping, go to the hairdresser, socialise away from the responsibility.
As Alzheimer's progresses, ask your friend what she/he would like. Would they enjoy you reading – perhaps the newspaper or a good, engaging book. Would a good old sing-song together be fun for both of you.
As Anne's dementia progresses, it would be helpful for Joan not to try and pull Anne back into the 'remembering' world. If Anne wants her lunch half an hour after breakfast (and repeats the demand many times!), it isn't helpful to keep telling Anne she had breakfast half an hour ago – she doesn't remember it now. Much better to enter Anne's world and maybe say something like "Let's just do this for a little while, and then I will get us something to eat". If Anne keeps repetitively asking what day it is, it is because she needs to know and has forgotten. As Alzheimer's progresses, the information simply does not stay.
Whatever stage your friend is at, do together the things she/he is unable to do quite so readily now. Work together to make a cup of tea, make scones (even if she can now just handle the mixing bowl), or go for a walk together. Help keep your friend as independent as possible.
There is no doubt, for anyone who develops Alzheimer's disease, the world changes. The truth is, though, that the world of the family and friends surrounding the sufferer changes also. Family members and friends cope with changes and patterns of behaviour they have not encountered before in the loved one. It is hard, even more so, when it gets to the stage where it would be so easy to show irritation, impatience, and incomprehension how this sharp and intelligent person suddenly can't remember the simplest things.
How do I know?
Not just because of my work at the Memory Clinic, but because my own mother developed Alzheimer's in her last years. My sister, Gillian, and I took care of her.
If you would like to read our story, it is available as an e-book from the GrownUps Shop (find it right here). It is a practical little book on the ways we found of handling mum's dementia – and the things we wish we had known then. The book is entitled: When Children Become Parents: Understanding and Coping with Alzheimer's.
There is a wonderful two or three minute video about exactly how Alzheimer's progresses and what it takes with it at various stages of the disease. Of course it is, of necessity, simplified, but it gives an uncomplicated, clear look at what is happening for your friend or relative. You will find a link to it on my website, go the Dementia page and you will find the link at the bottom of the page.
Do you have suggestions that would be helpful for Joan? Would you like to share your own experiences. If so, please email me at Dr.Lamont@memoryclinic.co.nz and I will pass them on through a future column.
Dr. Allison Lamont is founder and Clinician at the Auckland Memory Clinic She may be contacted via email or on (09) 575 5432.