#AgeingEqual – Testimonials from AlzheimerEurope

5 December 2018

Today, we feature 3 testimonials from Alzheimer Europe’s European Working Group of People with Dementia: Tomaž, Helen and Carol


Statement from Tomaž, member of European Working Group of People with Dementia and Alenka his supporter, from Slovenia


I think the major problem is people still underestimating the abilities and skills of elderly people. As a matter of fact, we need more time to think or finish specific tasks, but we are still able to do things properly and with quality. Ageism is a kind of social construct. When I was young, it was normal for young people to have a deep respect for and admire the wisdom of older people. Nowadays, this is absolutely gone. Ageism overthrew the great old values. Imagine how you would like to be treated when you are getting older. No one has ever thought about the fact that elderly people have experiences, have maybe gone through difficult life situations (wars, poverty, hard work), have some health problems, low pensions and less equal opportunities in society (e.g. health insurance, adapted public transport, education, part time jobs…). Yet, we need to equally accept every older person, no matter of his/her background or whether he/she has dementia or disability. To reduce ageism, it might be helpful to reanimate and connect younger and older generations. The intergenerational projects have a potential to fight over this never-ending stigma.


Statement from Helen, member of the European Working Group of People with Dementia from Ireland

When I was diagnosed with dementia it felt like falling off a cliff into a dark hole, I struggled to find information and access services. I was viewed by medical professionals as a hopeless case, not a person with a disability needing support and services to live as well as possible. When I turned 65 I changed from being a person with a cognitive issue to an older person. Being an ‘official’ older person brought access to older peoples services but older people are traditionally encouraged to accept their fate and not offered rehabilitation. I want dementia to be viewed as a disability to ensure those of us living with the condition are afforded the rights and supports that other living with a disability are offered. If I was in a wheelchair no one would question my need for a ramp but cognitive ramps are not forthcoming.  I believe framing dementia as a disability would encourage a rights based approach and a better understanding of the human rights issues that affect those of us living with dementia


Statement from Carol, member of the European Working Group of People with Dementia from Scotland

I was 49 when diagnosed (with vascular dementia) & thought my life was over. I had no clue what illness it was, neither did my family. I was given a huge book and told I would have a good six months. I thought I was going to die or end up in a home. Dark times. That was 11 years ago and although there have been big changes, good days & bad, I have learned to keep as busy as your body allows you. It helps big time. I've had done my stint of sitting about the house & everyone keeping an eye on me. It was a horrible time. That's what the doctors told my family. Sadly my marriage broke up because my husband was terrified but we stayed friends, closer than before. Sadly he got cancer and I went back to care for him. It was hard but I managed to keep him at home until he passed. So getting older with dementia does not mean the end of my world like I thought. I am involved with different working groups. I feel it's a privilege and keeps me well. I use laughter to get me through rough times and when you think of it a lot of not nice things come with age. Thank you.

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