Tomorrow sees the beginning of Dementia Action Week here in the UK.

Dementia Action Week is a national event, led by the Alzheimer’s Society, that sees the UK public taking action and raise awareness, to improve the lives of people affected by Dementia and their families.

It is also about changing attitudes and perceptions of Dementia rooted in the 1930’s.

This year the Alzheimer’s Society are calling upon the government to build a social care system that we can be proud of, as they believe that the current system is inadequate, hard to access, costly and unfair and this has been further exposed by the coronavirus pandemic.

“We need a system that means every person living with dementia, and every carer, can get the support they need to stay happy, healthy and independent for as long as possible. This means quality care that is right for them, free and easy to get, no matter where you live – like the NHS.” To find out how you can get involved,


As part of Dementia Action Week, on my “Meet the Professionals” programme on Deepness Dementia Radio, I will be chatting to Beth Goss-Hill, a Consultant Admiral Nurse with Dementia UK about the charity and what support an Admiral Nurse can provide for people living with Dementia and their Families.

Perhaps if local professional in Sheffield had involved people living with Dementia and their families last year when they discussed whether to fund Admiral Nurses, the outcome would have been different including upholding International Law via Articles 19,23,25 & 26 of the United Nations Convention on the Rights of Persons with Disabilities.

There is an urgent need to move away from the

 “Medical Model of Care” to the “Social Model of Care”,

which in turn moves care from

 “Rights Abuses” to “Rights Upholding”,

from BPSD to identifying unmet needs

from seeing the disease and a set list of actions

To seeing the Person, as a Human Being, not a medicalised object.

That as Human Beings we are all different

That our experiences are not a set list in a textbook

That people living with Dementia all experience our Dementia differently.

After all, on the whole, we legislate and treat animals better.

But Society forgets the lessons of the past.

After the Second World War ended, the horrors of the 1930’s and the war years were soon forgotten.

Refugees from war torn Europe and those that came over on the Windrush boat and others to help rebuild our country were treated appallingly.

When my Uncle and his family took up the offer of the £10 ticket to emigrate to New Zealand at the beginning of the 1960’s, on arrival, they were abused and treated like cattle for a long time before they could afford a home of their own and start their own business.

Governments, professionals, and society in general have short memories.

The horrors of the 1930’s are only 90 years away, still in some people’s lifetimes, yet the discrimination, inequality, poverty, and rights abuses continue on an industrial scale regardless of a person’s age, colour, ethnicity, gender identity, religion, poverty/wealth, disability etc.

The “It will not happen to me” belief still pervades in today’s society.

The realisation that anyone can be one second from discrimination, inequality, poverty, and rights abuses still has not formed in the fabric and understanding of today’s society.

A failure of past generations and Governments to change the future by learning the lessons of the past.

It is 24 years since Tony Blair promised to fix Social Care,

4 years since Theresa May promised to fix Dementia Care,

2 years since the Labour Party under Jeremy Corbyn released their policy document on a National Care Service


and 662 days since Boris Johnson stood outside No: 10 and promised to fix Social Care.

Reform of Social care should have been part of the roadmap out of the COVID lockdown, putting in place systems and services to support people who have been abandoned by the state over the last 14 months, during which time support was reliant on 3rd sector organisations.

The media talks about things getting back to normal but for many, the problems have only just begun.

14 months indoors in a quiet environment and then going out into a noisy busy environment will be a significant challenge for many not just living with Dementia but other Disabilities as well.

Still the can is being kicked down the road.

Boris Johnson finally announced a Public Inquiry into the Pandemic

I cannot just contain the voices of Politicians, Professionals, Organisations and 3rd Sector Organisations, there must be people representing all sectors in Society.

Everyone that wishes to have their voice heard must be allowed to do so if it is to be a truly Public Inquiry.

It must stop the

“Young should not pay for the Old”

“Non-Disabled should not pay for the Disabled”

“The wealthy shouldn’t subsidise the poor”

1930’s attitudes that should have no place in a 21st Century Society

That forces Government and Societal change not just during a Pandemic but in more normal times as well

Just as with the recent Royal Commission on Aged Care in Australia, the Public Enquiry must include the voices of the lived experience and their families upholding International Law via Article 29 of the United Nations Convention on the Rights of Persons with Disabilities.

The voices of the lived experience should not be included just to validate the Inquiry.

They must be included to inform and direct the outcomes of the Inquiry.

Nothing about us, Without us.