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How to become a Dementia Activist

When you’re living with dementia, you see the world differently.

You experience problems and annoyances that, although obvious to you, are invisible to people who are not “tuned-in” to the needs of people like us. You see injustices, lack of provision and support, unfairness and a lack of understanding that can be infuriating and frustrating in equal measure.

Well? What are you going to do about it? We all like a good moan, but most of us expect others to fight our battles for us.

Dementia charities are working hard to address many of the injustices and inequalities that we face, but they can only do so much. WE on the other hand, can make a big impact on both the local and national level by becoming “active”.

What is activism?

Activism is usually defined as “the use of direct and noticeable action to achieve a result, usually a political or social one”.

It’s “putting your money where your mouth is”.

Activism gets results. If you’re living with dementia, your lived experience is a powerful tool to persuade and educate.

Where you see a problem or injustice –you address it. There are many ways to make a difference and change things for the better, and there is a real buzz in knowing that you have stepped-up and done your bit to improve the lot of people in the dementia community.


Let’s start local and then expand. Local problem: Your local surgery is difficult to contact. There is no public email, and you can be held in a queue for up to an hour before speaking to a receptionist. Actions:

  • Write to the Practice Manager. Explain that, by the time you get through on the phone, you are so agitated and confused that you can often not communicate properly and may garble and mis-speak, making it stressful and difficult for both you and the person on the other end of the phone.

  • Perhaps submit a Freedom Of Information(FOI) request to find out the average waiting time and the number of callers who drop out before getting through. You might also want to ask how many patients in the practice are living with dementia.

  • Be constructive. Suggest solutions, such as a dedicated number for people living with dementia, or an email or online booking option.

  • Don’t take no for an answer. Some Practice Managers are a law unto themselves, but there are other ways to skin a cat. Explore your options. Perhaps your practice has a patient participation group. Most have, and they can be quite influential.

Still no positive outcome? Leave a critical review on the Care Quality Commission website Local problem: Your town is not dementia-friendly. Signage is patchy and shopping is a daunting and stressful experience.


  • Write to your Councillors and your local MP. Tell them about the problems you experience day to day and suggest some of the things they could do to address them.

  • Explain the benefits (more footfall, a better experience for all visitors, a feather in their caps for being dementia friendly etc).

  • If that falls on deaf ears, contact your local radio and TV broadcasters. They will often be glad to interview you and help your cause.

  • Use Social Media to build support. Maybe start a poll or referendum.

  • Is there a local celebrity who might be sympathetic to your cause.

Regional problem: Bus services are patchy and any journey is stressful because there is no indication that tells you when you have arrived at your destination. It is easy to miss your stop, and you are then cast adrift in an unfamiliar place, sometimes with no idea how to get back.


  • Write to your local MPs, Councillors and bus companies. Explain the problem and suggest solutions.

  • Let them know that you’re keen to work with them. Once again Radio, TV and Social Media can help further your cause.

  • Consider writing directly to the CEOs of the bus companies.

  • Also, look for any action groups that are active in this arena. They can assist you.

National problem: Late diagnosis of dementia: A lot has been said on this topic and our dementia charities are working hard to see how diagnosis can be improved. There is a lot that YOU can do to help though.


  • Lobby your MP. They may be unaware of the problem.

  • Use Radio, TV and social media.

  • Ask friends and family to lobby THEIR MPs

Offer your help to the dementia charities as a person with lived experience. You have a powerful story to tell that will enlighten people.


Every problem is unique and requires an equally unique solution. The ones I have outlined above are common, but their causes and possible solutions will vary. Remember, you can’t win every battle, but doing SOMETHING is better than doing NOTHING. Look for allies. You probably won’t be the only person experiencing the same problems. Try not to alienate people. They’ll only dig their heels in. Suggest solutions and, if they’re implemented, let others take the credit. Who cares as long as improvements are made. Be reasonable and persistent. Don’t take no for an answer without a full explanation. Have faith in yourself. YOU are the expert on what affects your quality of life.

Activism becomes a way of life. It improves one’s confidence, removes the feeling of impotence and gives great satisfaction when a degree of success is achieved. And if you have to rattle a few cages? So be it. Some cages NEED rattling. Now get out there and get active! We need you. Please let me know if you've been actively involved in making improvements for people living with dementia in YOUR community. What was the experience like? Were you able to achieve your goals? Do you have any hints and tips you'd like to share?

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