5 women making an impact for people living with dementia

This International Women’s Day we’re celebrating women helping to #BreakTheBias around dementia. Women working towards a world free of stereotypes and discrimination for everyone with dementia.  A world that's diverse, equitable, and inclusive.

We’re focusing attention on this not just because these women are a few of those doing amazing work to raise awareness of specific issues, but also to draw attention of the impact of dementia on women.

Women are twice as likely to be diagnosed with dementia. They are also far more likely to care for a person with dementia.

Worldwide almost three quarters of informal dementia care is provided by women. 

There are so many women working in so many different ways to change the landscape of dementia – raising understanding and breaking taboos.

Here are just five of our dementia heroes. 

Shelagh

A close-up of Shelagh smiling

Shelagh Robinson has been raising awareness of dementia since her diagnosis of Alzheimer’s disease 11 years ago.

Her campaigning for the rights of people with dementia has gone all the way to the top, lobbying at the House of Parliament. She’s also worked with the Three Nations group to raise the voices of people with dementia in all areas of society, not least within Alzheimer’s Society.

A life-long fan of Manchester United, she was delighted when she was asked to take part in our Sport United Against Dementia campaign, including meeting her hero Denis Law to reassure him that you can live well with a diagnosis of dementia.

Read more of Shelagh’s story, and watch the video of her meeting with Denis Law.

Chris

Chris by the sea on a sunny day

Chris Maddocks was just 60 when she was diagnosed with vascular dementia, and since then she’s also been diagnosed with Parkinson’s disease and dementia with Lewy bodies. She uses her own experiences to help others understand more about dementia.

Chris has been particularly active in raising awareness of the issues that the LGBTQ+ community face, speaking openly about her own experiences as a woman with dementia. She’s helped Alzheimer’s Society understand more about what we need to do better to support LGBTQ+ people affected by dementia, as well as raising awareness in her public speaking, but visiting groups to talk about her experiences and in the media. 

Chris talked to us about her experiences and the work she does last Pride month.

Emily

Emily smiling to camera

Emily Wilson’s husband Jim was diagnosed with dementia with Lewy bodies when he was 66 and she was 58, a condition she estimates he’d been living with for a decade before diagnosis. In the time it took for Jim to be diagnosed, their daughters had aged from about 10 and 18 to 22 and 30 – a long time without understanding what was happening to their Dad.

Emily gave up her successful career in local government to be a full-time carer for Jim, but used her experiences to support Alzheimer’s Society to influence Northern Ireland government policy. She has also advised on dementia research projects and spoken in the media about the impact of young-onset dementia.

Since Jim died in 2020, Emily has started research herself, studying the support that families affected by young-onset dementia need for a Masters in Social Care at the University of Ulster.

Read more about Emily and Jim’s dementia journey and the impact of losing him.

Morcea

Morcea in her garden smiling to camera

Morcea Walker uses her position as a leader to help overcome the stigma that dementia still has in the Black community. Her vital work has drawn attention to the specific needs of Black people and those from other ethnic groups who are affected by dementia. 

Whether it’s culturally specific reminiscence, inclusive social services, or helping churches become more dementia friendly, Morcea works tirelessly to raise awareness. She helps Alzheimer’s Society understand how we need to adapt to better support people from Black and other ethnic minority communities in a nuanced way.

Read Morcea's blog on the big issues facing Black people with dementia in the UK.

Vicky

Vicky taking part in Memory Walk

Vicky McClure is one of Britain’s best loved actresses. She’s been using that platform to talk about dementia openly, helping break the taboo for more than a decade. When Vicky opened our Nottingham Memory Walk in 2010, she had no idea that a year later her Nana would be diagnosed with vascular dementia. 

Communicating with her grandma through singing helped Vicky understand the power of music for people with dementia, and in 2018 she formed a dementia choir in her home town of Nottingham, making a hugely successful BBC documentary Our Dementia Choir that explored the science and the impact of the power of music for people with dementia. 

Despite her busy filming schedule, Vicky continues to be an Ambassador for Alzheimer’s Society, and has opened Memory Walk in Nottingham for 11 years. 

Read more about Our Dementia Choir.

Have your say

These are just five of the many, many women helping to change the landscape of dementia.

We’d love to hear who your heroes are. Reply in the comments below, or tag us on social media using the hashtags #IWD2022 and #DementiaHeroes.

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5 comments

Very useful and helps me to understand what is going on in my head.

I find these communications very helpful. I am having to learn how to adapt to my husband 's changing circumstances. He's now in incontinence pants,(Tesco do a good version) & sleeps a lot in the daytime. I've got him a wheelchair as he's getting increasingly weak but have to find suitable flat walkways as it's harder than u think to push one, but benefits us both to get out.

Sue, I know various incontinence pads are available but noted after my wife went into care that the care home separate pads were much better. My wife used to to tear them off and put them down the toilet if I was not watching. The whole caring process is a learning experience and can be a guilt ridden trip for the carer. I often jolt as something I did or did not do crosses my mind

My husband has Vascular Dementia, he doesn't sleep during the day but he goes to bed early between 6 - 7pm. He does wake-up sometimes really early. This morning it was 3.30am all he kept saying was "I want to get up, please help me" I usually have to get up to calm him down. This saying of "please help me" happens most afternoons. I do take him to Age Uk Dementia coffee mornings twice a month which I really enjoy as I can talk to other wives or husbands who care for there loved ones with Dementia & I find that they have the same type of problems that I have!! It is so sad

Hi Margaret, thanks for getting in touch.

It sounds like you would benefit from joining our online community, Talking Point, where people affected by dementia can share their experiences. You can browse the conversations within the community or sign up for free here: https://forum.alzheimers.org.uk

We'd recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support that's relevant to your situation. You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps for now, Margaret- and remember to call the support line on 0333 150 3456 if you need someone to talk to.

Alzheimer's Society website team