At the recent federal Parliamentary Friends of Dementia event in Canberra, attendees heard from Dementia Advocate Janice Hodgson, whose husband Fred is living with dementia. Janice shared her story and her thoughts on the importance of Dementia Australia’s Dementia Friends campaign. Below is a summary of Janice’s presentation …
“What is a Dementia Friend? Someone who takes the time to find out something of what it means to live with dementia, in order to be able to relate more meaningfully with them.
Ever since my husband Fred was diagnosed with dementia seven-and-a-half years ago, I have resolved to do all I can to give him the best quality of life possible.
This has meant reading books, attending education classes led by the wonderful team from Dementia Australia, and being part of support groups where we could all share the tears and laughter of our daily ups and downs in a safe environment.
Time then to help other family members understand what was happening with their father. Being a bossy teacher, I gathered my children together and gave them a lecture on communication and dementia. I’m not sure they appreciated it at the time, but we do now have a family that has accepted the diagnosis, relates well to Fred, and offers encouragement to me. They are now helping our grandchildren to be dementia-friendly as they spend time with their Grandfather.
Continuing to socialise outside the family has been a much bigger hurdle. I look back 30 plus years to when my Mother was dying with dementia, isolated and lonely in Kenmore Mental Hospital. My Dad was struggling with anger, shame and fear, and I am very grateful for all the changes that have happened since that time. However, stigma and shame are still prevalent and, as we know, there is no cure for dementia, so we all need to continue to do more.
Dementia Australia’s Dementia Friends Campaign is therefore an important part of the jigsaw in developing dementia-friendly communities and giving Fred and the almost half a million others like him a sense of belonging, a sense of worth, and a sense that we CARE!
I struggle with outspoken ignorance, and friends or acquaintances who visit, or stop in the Mall to chat, and challenge Fred’s diagnosis. “Oh Fred doesn’t have dementia. I think you should get a second opinion!’ This all being said right in front of my husband.
They have no idea of the battle it has been and the courage it takes to get to the point of actually receiving a diagnosis, and then dealing with that diagnosis and the associated stigma.
I struggle with people who respond with ‘well Fred is 88! It’s just his age!”
I struggle with people who ignore Fred in conversation as if he is no longer there.
I struggle with people who try to correct him all the time.
I want Fred to be able to walk into a bank and know there will be someone who can recognise his difficulties and help him to conduct his business without his getting agitated and confused.
I want him to be able to walk to the local cafe, order a coffee and cake and, if he has forgotten his money, know they will give me a phone call.
I want him to be able to go for a walk around Lake Ginninderra, and to know when he forgets the way home someone will recognise that he is lost and offer to walk home with him.
Fred’s life is restricted because people are ignorant.
I am speaking today to a powerful group of people. People who are change makers. Politicians and media, but also individuals who can go home tonight and sign up as a Dementia Friend. You can encourage your families, your friends, and anyone you come across day by day, to sign up and show their support. They will learn something along the way, and we can all wear our badges with pride.”
Find out more about becoming a Dementia Friend at www.dementiafriendly.org.au
My Mum has dementia but can still hold a very good conversation. So when she introduces me multiple times to the same people, they look confused. When I tell them that Mum has dementia, they often say "you would never know". Mum is in Aged Care as she was living alone after Dad passed in 2013 and forgetting to eat, not paying bills, and refused to have someone live with her, or for her to live with someone else. Sadly though she is isolating herself as I believe she gets embarrassed when she doesn't remember people and she won't tell them that she has Dementia. I have found most people to be understanding once they know.
My husband is in full care and I struggle with the way some staff speak too them in a horrible sharp tone and myself also like I am a vegetable and have no idea
Excellent presentation. My mother had dementia and I can relate to all the discussion in module 1