Challenging the stigma surrounding Dementia

Challenging the stigma surrounding dementia

Stigma is one of the biggest barriers for people living with dementia to live fully with dignity and respect. Help us fight stigma by learning more about its effects and taking steps to reduce its impact.

Information Sheet

What is the stigma surrounding dementia?

  • Stigma surrounding dementia encompasses any negative attitude or discriminatory behaviour against people living with dementia, just on the basis of having the disease.
  • When a disease is as prevalent as dementia, yet still poorly understood, it’s easy for false beliefs to spread. Left unchallenged, these beliefs perpetuate stigmatizing attitudes against people living with dementia, reducing their quality of life.
  • These attitudes extend to the families and caregivers of people living with dementia, affecting them as well.
  • The unfortunate reality is that any person living with dementia is very likely to encounter stigma – even though dementia can affect anyone. No one is immune to the risks of dementia, and there is no cure or treatment that can guarantee prevention.
  • People living with dementia did not choose to have this disease, and they certainly don’t appreciate being labelled and ignored, among other negative responses, due to their diagnosis.

Stigma takes many forms

There are many ways that stigma can negatively impact the lives of people living with dementia, their families and their caregivers:

  • Lack of awareness about dementia
  • Harmful and misleading assumptions
  • Negative language
  • Belittlement and jokes
  • No support after diagnosis
  • Stigma by association
  • Loss of self-worth

People living with dementia are experiencing stigma right now

Even though more than 70,000 kiwis are living with dementia, many feel excluded, ignored and treated differently for something beyond their control.

If you know a person living with dementia, chances are they’ve experienced discrimination that they wouldn’t have faced if they didn’t have dementia.

Sadly, while most New Zealanders acknowledge that dementia is a serious disease, and that people living with dementia are likely to experience discrimination, attitudes that reinforce stigma against dementia are still common.

Quotes from people living with dementia and care partners

“When I first found out what I had I was a bit embarrassed about it, I wasn’t sure exactly what it was. Now I just accept it, as long as I’ve got a notebook by my side to write things down in it. It started off I wasn’t too keen, I thought people would think I was a half-wit but now I’ve just got on with life best I can”.

“I just say sometimes I forget about things. I think it’s best if you just talk about it. I just laugh about it and say I’ve forgotten, but people are very understanding, they are”.

“People should be realistic, not just pretend that everything is alright because obviously it’s not, they still need to treat the person as normal but just realise the person might not answer at that time, or appropriately, but just not read into it too much. People have good days and bad days and you just need to roll with it”.

“We’ve found a drop off of people who don’t visit and things like that, which is a shame really”.

“Knowledge is power, the public need knowledge to know that it isn’t a stereotype, they have a stereotype in their head of what the person is like and this is an area where the public need educations”.

Together, we can fight the impact of stigma

Positive change starts with learning. When you know the facts behind dementia, you will be able to challenge assumptions and false beliefs when they appear. By sharing your knowledge, you can reduce the negative impact of stigma against people living with dementia, families and caregivers.

Staying engaged

The ‘use it or lose it’ principle is key to living well with dementia. Whatever is regularly practiced – verbal skills, social skills, physical skills – will be maintained for longer than skills which are only rarely used. Therefore, arguably the best ‘treatment’ for dementia is to engage in a range of activities both social and where possible practical/physical, that are enjoyable and meaningful to the person with dementia.

Over time the progressive nature of dementia means that a person’s abilities change and a person may need more help or different activities to keep them engaged and experiencing success. The interaction or activity needs to be ‘just right’ so that the person can meet the challenge without being overwhelmed or under stimulated. Remember that the needs of a person with dementia are no different from anybody else’s, but as dementia progresses and a person’s thinking, language and physical skills decline, a person will need more support to ensure they are able to effectively meet their needs. This can require creative thinking and support.

Quotes from people living with dementia

“Just figuring out what I can’t do helps me keep going, I’ve had to give up driving. What is great is getting the taxi chits, it’s incredible, if it wasn’t for that I don’t know what we’d be doing. Meeting people is something I love…I can do calligraphy, it’s so relaxing and walking … I wrote my memoirs last year. I had no trouble remembering things from my past. I’m reading it again and remembering things again”.

“I enjoy tramping, trying to see friends and doing things like television. I’m not a member of other clubs. One of the problems I’ve got is that because I retired earlier than a lot of others, they’re still working and I don’t want to intrude on them. When they retire then I can socialize a lot better. I’m in a tramping club, we do 15, 17 kilometres. I walk regularly. I garden. I’m more sensitive to things”.