A Brief History of Dementia in the UK

Introduction

Dementia has existed for as long as human memory, yet for much of history, it was hidden in plain sight—misunderstood, mislabelled, and often ignored. The journey towards awareness and meaningful support in the UK has been slow, uneven, and shaped by persistent stigma. But it is also a story of progress, activism, and hope.

For much of the 20th century, dementia in the UK was a hidden condition—talked about in whispers, misunderstood by professionals, and neglected by policymakers. The history of dementia services and awareness is a story of social change, grassroots activism, and evolving medical knowledge. While many challenges remain, the journey so far reveals how far we’ve come—and how much further we must go.

Early Years: Misunderstood and Marginalised

Before the mid-20th century, dementia was not recognised as a distinct medical condition. Terms like “senility” or “dotage” were used to describe cognitive decline in older people, seen as a natural, if unfortunate, part of ageing. There was little attempt to diagnose or treat dementia—only to manage behaviour, often through institutionalisation.

Long-stay psychiatric hospitals, once known as “lunatic asylums,” were commonly used to house people with advanced dementia. The focus was custodial, not therapeutic. Family carers received no formal support, and public understanding was minimal. Dementia remained invisible, lumped in with other mental health conditions or dismissed altogether.

In the early 20th century, dementia was rarely spoken of in public. Older people showing signs of cognitive decline were often dismissed as “senile” or simply “losing their marbles.” There was little understanding of dementia as a medical condition or to diagnose or treat it.

Alois Alzheimer 1864-1915

Families quietly coped, and those whose behaviour became too challenging were institutionalised in asylums, care homes, or long-stay hospital wards.

Even in the medical world, understanding was limited. Alzheimer’s disease had been identified in 1906 by German psychiatrist and neuropathologist Alois Alzheimer—but was still seen as a rare curiosity affecting younger people.and remained a niche topic in UK clinical practice. Most cases of dementia were undiagnosed, and research was sparse.

1980s–1990s: Seeds of Recognition

The 1980s brought the first real stirrings of change. As the UK’s population began to age, the number of people with dementia rose—and so did public concern. Charities like the A pivotal moment came in 1979, when a group of concerned carers and professionals founded the Alzheimer’s Disease Society (now Alzheimer’s Society). It was a grassroots response to a growing crisis: more people were living with dementia, but there were few resources, little research, and even less public understanding.

The 1980s saw this charity grow in visibility and influence. It produced leaflets, raised awareness, and lobbied government departments. It also began to fund early research into dementia causes, symptoms, and treatments.

They helped shift the conversation from shame and silence to support and visibility.

Tom Kitwood 1937 - 1988

By the 1990s, the concept of “person-centred care” gained traction, influenced by the work of psychologist Tom Kitwood. He challenged the idea that dementia inevitably meant loss of identity and proposed that emotional well-being mattered just as much as cognitive function. This was revolutionary.

2000s: Policy and Momentum

The new millennium saw dementia finally reach the political agenda. The 2009 publication of the first National Dementia Strategy for England, Living Well with Dementia, was a major milestone. It called for better awareness, earlier diagnosis, and improved support for carers. Scotland, Wales, and Northern Ireland developed their own strategies soon after, reflecting local needs and values.

GPs were encouraged to spot dementia earlier, memory clinics expanded, and initiatives like dementia-friendly communities began to take root.

2010s: A Decade of Action and Activism

The 2010s brought a surge in activity. Prime Minister David Cameron’s 2012 “Challenge on Dementia” pledged to double research funding and improve diagnosis rates. The term “dementia-friendly” entered the mainstream, supported by the Alzheimer’s Society’s Dementia Friends campaign, which trained over 3 million people in basic dementia awareness.

Crucially, people living with dementia themselves began to lead the way. Groups like DEEP (Dementia Engagement and Empowerment Project) and the 3 Nations Dementia Working Group gave people with dementia a public voice and a seat at the table.

2020s: Rights, Inclusion, and Unfinished Business

Today, we talk more openly about dementia, but the journey is far from over. While diagnostic rates have improved, access to post-diagnostic support remains patchy. Social care remains chronically underfunded, and too many people still face their diagnosis alone.

The COVID-19 pandemic hit people with dementia particularly hard—both in care homes and in the community. But it also sparked renewed calls for reform and investment.

There’s now growing recognition that dementia is not just a medical issue—it’s a human rights issue. The focus has shifted from “care” to inclusion, autonomy, and citizenship. More of us people living with dementia are speaking out, challenging stereotypes, and shaping policy.

A Future Worth Fighting For

From silence to strategy, from stigma to strength—the UK’s dementia journey has come a long way. But awareness is just the first step. True progress lies in listening to lived experience, funding meaningful support, and creating a society where people with dementia are valued, included, and never written off.

This is not just a medical challenge. It’s a social movement. And the history of dementia in the UK is still being written—by all of us.

Timeline

🔍 Early 20th Century – "Out of Sight"

• Dementia misunderstood as “senility”

• Many were institutionalised or hidden from view

• No clear medical framework or public awareness

🧱 1979 – Alzheimer’s Society Founded

• The UK’s first major dementia charity

• Beginning of organised advocacy and public voice

📢 1980s–1990s – Recognition and Rethinking

• Dementia becomes a public concern

• Psychologist Tom Kitwood champions "person-centred care"

• Charities push for better support and education

📘 2009 – First National Dementia Strategy (England)“Living Well with Dementia”

• Focus on early diagnosis and support

• Scotland, Wales, NI follow with tailored plans

🧩 2012 – Prime Minister’s Dementia Challenge

• Research funding doubled

• Rise of “dementia-friendly communities”

• Memory clinics expand

🧍‍♀️🧍‍♂️ 2013–Present – Lived Experience Leads

• DEEP and the 3 Nations Dementia Working Group amplify voices

• Dementia Friends campaign trains 3M+ in awareness

• Activism shifts focus from care to rights and inclusion

💥 2020s – The Ongoing Fight

• Pandemic highlights deep inequalities

• Services still underfunded

• But the movement for dementia citizenship grows stronger

✅ We’ve come a long way—from silence to activism. But awareness is just the beginning. Now it’s about action, inclusion, and human rights.