Chris Roberts had a full and active life. He had a family, a business, a place in his community. Then he noticed some changes: he began to make small mistakes, he didn’t always recognise people, he became frustrated and acted out of character.

Chris was diagnosed with Alzheimer’s disease (AD).

‘I was 50,’ he recalls. ‘We didn’t even think it could happen to younger people.’

However, while diagnosis can come as a shock, and Chris’s life may have changed, he continues to find new ways to spend quality time with loved ones and to use his experience to support others.

Chris shares his story in a new video developed by Alzheimer Europe and EFPIA. It offers a portrait not simply of a patient, but of a person: ‘I may have Alzheimer’s disease, but it doesn’t have me. It doesn’t define me. I’m living with it.’

Prioritising quality of life

The testimony of people like Chris adds an important layer of understanding of a disease which, despite its impact on society, remains poorly understood.

Far too little attention is paid to the hopes and priorities of those living with Alzheimer's disease and the needs of their supporters. We must listen and respond to their needs.

When we truly listen, one factor that comes through is the value of timely detection. It was, as Chris puts it, a ‘relief’ to have an explanation for the signs and symptoms of AD that he was experiencing every day. A diagnosis marks the opening of a new chapter in a journey that can be difficult. Instead of covering these problems or being frustrated by new limitations, it can prompt important conversations in families and lead people with Alzheimer’s disease to seek help.

Chris’s story reflects data from recent studies showing that ‘quality of life’ is the priority outcome for people living with early-stage AD and mild cognitive impairment – a preference that remains even in more advanced stages of the disease^[1],[2]. People with AD, just like everyone else, want to find meaning and fulfilment in their daily lives. They seek family, community; they want to receive support and to offer it.

For many living with the disease, quality of life means staying engaged with hobbies and communities that matter to them. It is, perhaps, no surprise that 35% of adults with mild to moderate dementia reported feeling lonely^[3]. For Chris, becoming an advocate for Alzheimer’s awareness and research and Chair of Alzheimer Europe’s European Working Group of People with Dementia until 2024, provided an effective way to educate others in the AD community and beyond. ‘Knowledge is power,’ he says. 

The value of hope and time

Alzheimer’s advocates and especially people with lived experience are helping to raise awareness of the early signs of dementia, the impact of diagnosis, and the value of hope for the future. A timely diagnosis provides an answer to the symptoms experienced by the person and offers the potential of better management of symptoms, better quality of life, access to support and counselling and better long-term outcomes.  

For decades, AD has been a challenging area of medical research. Yet, the commitment of scientists, doctors and the Alzheimer's community is leading to important advancements in our understanding of cognitive impairment and dementia. New diagnostics and medicines are now available in a number of countries, and efforts continue to find a cure and lessen the disease’s impact, helping people maintain their independence, identity, emotional well-being, and social life, while reducing familial, societal, and economic burdens.

Preventing, detecting and managing dementia in ways that matter to individuals is essential for people living with the disease, their families and for our ageing societies. The scale of this challenge demands that this chronic disease should be an urgent public health priority for Europe.

The journey of living with Alzheimer’s disease is undeniably challenging, yet it is also proof of the incredible strength and resilience of those affected. Their stories remind us that even in the face of adversity, there is always hope.

We must continue to work together to support people with dementia, reduce stigma and share information. As Chris put it, ‘knowledge is shining a torch on a dark space’.

[1] PPA_A_333923 2793..2807 (nih.gov) - Priorities and Preferences of People Living with Dementia or Cognitive impairment – A Systematic Review; Wehrmann et al. 2022

[2] Six Things People with Alzheimer’s, Other Dementia Want You to Know | alz.org

[3] Functional Decline in Cognitive Impairment – The Relationship between Physical and Cognitive Function NED292.indd (nih.gov)