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Intergenerational Approaches to Dementia

“I believe that children are the future, teach them well and let them lead the way”

In the most recent #diversealz Twitter chat we talked about intergenerational approaches to dementia, specifically involving young people. This led to a support group on Facebook opening up a new page specifically aimed at teens/young adults who have had experiences with dementia. It can be found here, if you know of anyone who may benefit from it please share it with them. http://www.facebook.com/groups/446915195418582/ …
There will also be a webinar hosted by Alzheimers Society of Toronto: When a Teenager Becomes a Caregiver is on Nov 6, details are here: http://bit.ly/15QEItU 

Our first discussion was our wishes/hopes encouraging intergenerational approach. Our answers covered many bases:
– To see the person NOT just the symptoms.
– To understand it is NOT a “normal” part of aging.
– For more visibility for young caregivers including mentoring from seasoned caregivers and more support
– To teach children early on about dementia so it becomes less stigmatized. Also gives children more knowledge so they can be prepared if they experience it.
– For people NOT to judge my caring ability based on my age, that an age difference  is not a reason something can’t work.
– For young people to be encouraged to visit people with dementia, can boost activities, and can aid with the loneliness.

This led on to how important is it to teach children and young people about dementias?
Reduce Stigma: Educating youth would help ensure that our societies are more dementia-friendly from the get-go! Education important as reduces stigma at young age.
Different Approach: – If made aware of dementia and its effects early enough children could very useful, as they approach things completely differently to adults, more lateral thinkers? Certainly can be more creative.                                                                                                                               – Children can relate to all sorts of people. They’re the wise beyond what meets the eye.
The Future: –If children are taught to be compassionate members of society they can be the care providers to tomorrow’s elders. Caring instincts should be nurtured at an early age, and as much information given to young people, as it is likely this could lead to more wanting to become carers, social workers, speech and language therapists, occupational therapists – the list goes on. Again it comes down to stigma, once that is removed and young people are taught the facts they can make an informed decision about how to/whether to help.                        – Think we can all agree that everyone has a role 2 play in educating people about dementia and that it’s truly intergenerational. They will inherit our future. It’s up 2 them to bear the torch of how seniors are treated & later themselves.
Communication: People w/dementia often regress to a more child-like state, communication and interaction with children could become easier than that with adults.
Reality: Because it is something that is happening in our society, so surely we should all be educated on it? Children are the best place to start, they can be more resilient than we give them credit for, and stereotypes that have started to form can be more easily broken down.

How can teachers help:
-Teachers can help by talking of the intrinsic worth of older adults in society. Respect shows as value grows. Preparation will only be there if the topic is on the agenda for discussion. Best way to broach subject subject is make it real, invite either a carer or a confident newly diagnosed person into class to speak a lived experience. The teacher can make this a real meaningful experience that will make a positive difference to lessen taboo and stigma.
-Think teachers have 2 much to do, would like to see more carers/professionals giving talks, assemblies etc.
-Sex ed is hard enough, mental health brushed over at school, dementia still misunderstood.
-Visits to people w/dementia would be a good start – to encourage interaction and understanding.

How early do we start?
-We agreed we should start at an age where they can comprehend it, as children (and some adults) have the tendency to make fun of things they don’t know.
-It’s important to teach children early on about dementia so we can reduce the stigma surrounding dementia. Childhood is where we learn habits. Build the habit early on!

How can it be done?
-Music would be a great way for the two generations to interact, as it changes dramatically from one era to another, as does dancing. And as previously discussed music can open many doors for someone living with dementia.
– Would like to see work towards a debate perhaps inter-schools competition about dementia, possible activities, fund raising, awareness raising, why there is such stigma. So many topics children/young people could talk about and bring new ideas to the table.
-Make it a class in schools? Include it in a part of the current curriculum? PSHE? Science?
– In the US they are starting to involve the boy and girl scouts, is this something that has been tried in the UK? Or anywhere else worldwide?
-Also check out a fellow bloggers thoughts on how to make visits to a loved one with dementia a bit easier for younger members of the family http://babyboomersandmore.com/2011/12/11/alzheimers-heartache-young-family-members-adjusting-to-a-grandparent-or-parent-with-dementia/

What are the downfalls?
– Children could find experiences of a loved one with dementia emotionally difficult (as I think we can all understand). One lady I spoke to said she could “take it” having her relative be nasty and argumentative with her, but not to her daughter, even after explaining what has happening. She didn’t want her daughter to have sad memories of the relative.
-If children were to visit people living with dementia (PLWD), are there risks? Some can become violent/abusive with little notice (I guess this sentence could be applied to children as well but I think it was meant about the PLWD. We would also have to be careful with number of children visiting, I think we can all agree a class of 30 children converging on any one would be stressful. Nan said she would be happy with 2 or 3 for a period of time in the afternoon.
– What about parents who may not want their children to have this information? It happens in every area, there will be people who want to keep their children sheltered from the harsher realities of life. And can we blame them? We are concerned that children are no longer living a “childhood” due to modern technology and other developments, some may worry that this is more an “adult problem”.
– As every case is so different could we really teach ‘basics”?

For a more in depth look try this post:
Is it appropriate/possible/helpful to talk to school children about dementia? http://wp.me/p2sRpM-4u 

What does dementia look like:
Many different answers for this one:
-I can only imagine the person to ask Is someone living with it. I hear it feels like a fog has decended and the person is treated as if they have disappeared. Not a good place to be and not helped by ignorance, time for raising awareness is now.
-Faces of dementia is our loved ones who are affected.
-Dementia shouldn’t have a face! It’s a nasty thing that takes our loved ones!
-have noticed peoples faces/body physically changing when in height of dementia “episode” – or do I change them in my head so i can distinguish? anyone else noticed physical changes? like full on different face!
-Dementia is faceless. it could be anyone. Your gran, your neighbor or your former teacher.
-Dementia has no face for me, its the fight going on around it that does. Purple angels, geletea etc.
-dementia sometimes looks scared, puzzled. angry. tearful. happy. Childlike.

So what can one offer people who want to know more but aren’t ready to speak – yet.
– Max Wallack, young author Why Did Grandma Put Her Underwear in the Refrigerator?
– At a Youth Caregiver Support Group, young caregivers can discuss w/people in similar situations. We definitely think a young adult support group would be beneficial because they have unique needs.
-Lyrics & poetry. Interpret, analyse. Memories song with powerful lyrics http://www.youtube.com/watch?v=q_m5N24XQgM  . Song writing as means to engaging people.

Why is all this so important?
-People refusing to get diagnosed due to uncertainty, stigma and worry they may be locked up, see more positive stories of aging etc .
-Visited a care home the other day and chatted with *happy* residents! They wanted to see more positive care home stories too! .
-Our community needs to be shown that people w/ dementia & seniors can still contribute to society

Bonus:

Anyone fancy writing a poem about dementia? We want positive, uplifting poems including these words beginning with “d”:

dignity, diversity, duty, doting, delight, devotion

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7 thoughts on “Intergenerational Approaches to Dementia

  1. I believe it is important for children to understand Alzheimer’s disease so they can still interact lovingly with family members who have this disease. I am a 17 year old college junior, Alzheimer’s researcher, and Alzheimer’s advocate.I grew up as a caregiver to my great grandmother who had Alzheimer’s disease. After her death, I founded a nonprofit organization that has distributed over 26,000 puzzles to Alzheimer’s facilities. Recently, the book I coauthored explaining Alzheimer’s disease to children became available on Amazon.My hope was to provide some helpful coping mechanisms to the many children dealing with Alzheimer’s disease among their family members. 50 percent of the profits from this book will go to Alzheimer’s causes. I think this book could help a lot of children and families. It has received all outstanding reviews. “Why Did Grandma Put Her Underwear in Refrigerator? A Book Explaining Alzheimer’s Disease to Children.” http://amzn.to/13FYYxh

    Also, it is essential that school children be taught about dementia!

    • Max, you truly are an inspiration. Thankyou. You are living proof that younger people have just as much right as anybody to learn and indeed teach. Thankyou for posting the link to your book 🙂 x

  2. A poem from a carer of a loved one with dementia

    Dignity prevails everyday of your life
    You care, you love, your laughter delights
    Through the enlightenment of diversity
    Your devotion shines through
    Your duty to others shows no barriers too
    As a long doting parent, you are but the best
    Now it’s me whose devotions are put to the test
    As your child and your carer, now your memory has slowed
    You’re my bright shining beacon on the long winding road

  3. This article is magnificent in its scope. I am so pleased that more attention is being placed on the younger members of the family who are also affected by this disease. In my article, Alzheimer’s Heartache, http://babyboomersandmore.com/2011/12/11/alzheimers-heartache-young-family-members-adjusting-to-a-grandparent-or-parent-with-dementia/ I address how to make family visits a bit more palatable for the younger set. Let’s face it – if we’re having a difficult time as adults with the manifestation of this disease, imagine how children process the symptoms that they observe!

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