Personal realities - our latest young onset dementia dilemma

A society that understands the impact of young onset dementia on the person and their family and acts, informed by that understanding, to mitigate the impact is of paramount importance to attaining a life worth living.  

Recently with this in mind, the Young Dementia Network offered people affected by young onset dementia the opportunity to express personal responses to questions shaped by members living with the condition.  The questions asked what dementia had taken from their life, whether a diagnosis brought any benefits or comfort and what symptoms had most effect on their daily life.  

Nearly 200 people replied, with one third living with young onset dementia themselves and two thirds being close family members or friends. Almost all wanted their words to be shared publicly.  

Here is our dilemma. To advance society’s, and professionals, understanding of the impact of young onset dementia, the Network channels the authentic voices of members. Their voices express their personal reality; their perception of their experience at the time without a filter. They talk of frustration, isolation and loss amongst much else that runs the gamut of emotions and experiences.  

Forthright communication of this difficult reality is vital if we, in our professional roles and as members of society, are going to ensure equitable access to a sensitive diagnosis experience, tailored support and an enabling environment - the bare minimum. The Network needs to tell these stories. 

At the same time, and vying for attention in our minds, is that people affected by young onset dementia also need and want to find ways to live with hope; to make the most of the present. They draw on and are sustained by compassion, courage, resilience and versatility – their own and others. These voices express personal realities which encourage others to find the gains in young onset dementia. They speak about new-found confidence, deepening love and friendships and flourishing creativity. The Network needs to tell these stories too. 

Dementia in mid-life is a multi-faceted, complicated condition with every person’s experience unique. The Network’s purpose is to bring about change for the better; change that improves lives. We must share these stories to enhance understanding and prompt more support for the impacts of dementia that can be eased. And for that, both the personal realities of living with loss and living with hope need to be shared.  

We will be working with these young onset dementia personal realities over the next few months. In the meantime, if you haven’t already joined the Young Dementia Network, you can join here.  

If you need information or advice around young onset dementia, the key dementia organisations who can offer guidance and support are listed here.   

Tessa Gutteridge 

Chair, Young Dementia Network   

Programme Director for Young Onset Dementia, Dementia UK