The Hidden Strain of Dementia Support Systems
When people think about dementia, they often think about memory loss, diagnosis or the practical aspects of care.
What is spoken about far less is the emotional toll of trying to navigate support systems whilst also coping with the reality of someone you care about living with dementia.
Over the past few years, families have reached out to me for support during incredibly vulnerable times. In one situation, a family approached me specifically for guidance and advocacy.
In another, my role began as a companion and personal assistant to somebody living with dementia, but gradually evolved into supporting the wider family to navigate services, communication, referrals and care systems.
What has struck me repeatedly is the sheer amount of emotional energy it takes.
In some ways, it is hard to put into words.
The endless phone calls.
Repeating information over and over again.
Trying to work out who is responsible for what.
Chasing support that often feels fragmented or delayed.
Trying to advocate clearly whilst emotionally exhausted.
And all of this is happening whilst families are already coping with anticipatory grief, uncertainty, stress, and the gradual changes dementia brings into everyday life.
At times, even while supporting families alongside them, I felt like I was banging my head against a brick wall.
Not because professionals do not care but because systems themselves can feel complex, overstretched, disconnected and incredibly difficult to navigate in practice.
Families are often left trying to hold everything together whilst running on empty.
What stays with me most is this: not everybody has someone beside them helping them navigate it.
Not everyone has somebody who can make the calls, chase things up, attend meetings, explain information or help connect the dots when everything feels emotionally depleting.
And that matters.
Because people living with dementia deserve timely, compassionate support but the people supporting them need support too.
Dementia Action Week is about action, not just awareness. It asks us to look beyond understanding dementia itself, and consider the hidden emotional strain carried quietly by so many families every single day and what needs to change in the systems and support around them.
Alongside greater understanding of dementia itself, we also need to acknowledge the wider landscape of support that exists around it.
There are dedicated roles designed to support families at different stages of the dementia journey including Admiral Nurses, dementia navigators, dementia support workers, and post-diagnostic support services.
In some areas, post-diagnostic support can be incredibly helpful, offering early guidance, reassurance and signposting that can make a real difference. In other situations, families may experience this differently or may not be aware of what support is available at all.
What I’ve consistently noticed is that it is not about whether support exists, because it often does but about how easily families are able to find it, access it and join it together in a way that makes sense during what is often an intense time.
When you are already emotionally stretched, trying to understand a network of different services can add another layer of strain at the very moment clarity is most needed.
Because nobody should feel this alone whilst trying to care for someone they love.
And nobody should have to fight so hard simply to be heard.
For me, this has shaped the way I now offer support through Dementia Carer Support Consultations, creating a space where people can talk things through followed by gentle guidance and signposting, make sense of what is happening and feel less alone in what can often be a complex process.
Sometimes having somebody alongside you to listen, help navigate systems or simply make sense of things can make all the difference.
That matters more than we realise.
Gina Awad
Dementia Consultant, Advocate, Life Celebrant and Author
