Caring for a Loved One with Dementia:
Howie's Mission to Support Others
Dementia is one of those subjects that touches a huge number of lives, yet still manages to leave people feeling unprepared and alone. For many families, it becomes a daily reality, caring for a loved one at home, often without a clear roadmap.
For Howie Blanks, that journey became personal when he took on the care of his stepmother, Edna, who was living with dementia.
Throughout this time, professional home care played a critical role. Kingsway Care supported Edna at home for several years, providing consistent, compassionate care during some of the most challenging moments.
Reflecting on that experience, Howie shares:
Kingsway Care were amazing looking after my mum. I think the private care industry is the most underpaid and underrated occupation in the UK. I will always be grateful, especially for the help in those last two weeks. Getting a 24-hour team of Kingsway Carers together at the last minute, given the NHS debacle and trying to get an end-of-life diagnosis, even though two doctors had indicated Edna was at end of life.
This level of responsiveness and commitment highlights something often overlooked: when systems fall short, it is frequently homecare teams who step in to provide stability, dignity, and support when it matters most.
Howie's Stepmum Edna with her Grandson
BBC Radio Sussex Interview
BBC Radio Sussex interviewed Howie this week (16.03.2026) discussing his new initiative to help others caring for people living with dementia. Howie, now a volunteer ambassador for Dementia UK and founder of Sussex Dementia Voices, shared his wider experience of caring for his stepmother. His story highlights not only the emotional and physical demands of caregiving but also the gaps in awareness and support that many families face.
Becoming a Full-Time Carer Overnight
Howie’s journey into caregiving wasn’t planned. As one of just two close relatives to his stepmother, and the only one living locally, responsibility naturally fell to him. Edna lived with dementia for many years and became bed-bound for the final three to four years of her life.
Despite the severity of her condition, she was never formally diagnosed. Navigating the system to secure a diagnosis proved extremely difficult, something that, disturbingly, is not uncommon.
At the same time, Howie was working long 12-hour days.
Balancing full-time work with full-time caregiving might sound impossible. In reality, it often feels exactly like that.
The Critical Role of Homecare
One thing Howie is clear about is the vital importance of professional home carers. He credits Kingsway Care for supporting him as “amazing,” and emphasises how undervalued the profession is in the UK.
Home care workers, he explains, carry out incredibly demanding work, physically, emotionally, and mentally, yet are often underpaid compared to their NHS counterparts. (Kingsway Care is a proud Brighton & Hove Living Wage Employer.)
It’s not glamorous work. It’s relentless, hands-on, and often invisible. But for families like Howie’s, it makes the difference between coping and complete collapse.
Isolation and Lack of Support
Despite the scale of responsibility, Howie received very little structured support from healthcare services.
He describes feeling isolated, even with his professional background and experience managing people. Crucially, he was unaware of key organisations such as Dementia UK or other support networks that could have helped.
There was no clear guidance. No one stepped in to explain:
- What dementia meant in practical terms
- What support was available
- Where to go for help
Instead, he had to figure everything out himself, something many carers will recognise all too well.
Life Without Switch-Off
Caring for someone with dementia is not a role you can step away from at the end of the day. It follows you everywhere.
Howie recalls receiving emergency calls in the middle of the night and never being able to fully relax. Even when physically away, the responsibility remained.
To manage this, he installed cameras in the home so he could check on his stepmother remotely if needed. It wasn’t ideal, but it provided a small sense of control in an otherwise unpredictable situation.
Over time, the constant pressure led to a kind of emotional withdrawal, a coping mechanism many carers develop. You focus on getting through each day, often at the expense of your own wellbeing.
When Care Becomes Unsafe
As his stepmother’s condition progressed, her behaviour became increasingly challenging. One defining moment came when she became distressed and began holding a cosh in bed, leaving carers feeling unsafe.
Situations like this are deeply unsettling and highlight a difficult truth: dementia can fundamentally change a person’s behaviour.
For many carers, there comes a point where continuing at home is no longer safe or sustainable, despite promises or intentions made earlier.
It’s a reality that often brings feelings of guilt, even when there is no realistic alternative.
The Hidden Mental Health Toll
The emotional impact on carers is significant.
According to Howie, over 50% of people caring for someone with dementia experience depression, anxiety, or other mental health challenges. The combination of exhaustion, isolation, and responsibility creates a heavy burden.
And the scale of dementia itself is hard to ignore:
- Around one million people in the UK are living with dementia
- There are over 200 different forms of the condition
- A new diagnosis occurs every three minutes
- It is considered one of the biggest health challenges in the UK
In fact, dementia is so widespread that around half of the population will either live with it or know someone who does.
Grief, Relief, and Complex Emotions
When Howie’s stepmother passed away, the emotional aftermath was complicated.
Alongside grief, there was also a sense of relief, something many carers feel but struggle to admit. Watching someone live in a bed-bound state with severe dementia is incredibly difficult, and the end can bring a release from that suffering.
These mixed emotions are entirely normal, even if they feel uncomfortable.
Turning Experience into Action
Rather than stepping away from dementia after his stepmother’s death, Howie chose to get involved.
Motivated by his own experience of isolation, he wanted to ensure others didn’t have to navigate the system alone.
He began volunteering with Sporting Memories, a charity supported by the Sussex Cricket Foundation, which runs community groups, many attended by people living with dementia.
From there, he became a volunteer ambassador for Dementia UK, helping to raise awareness of their helpline and services.
Listening to Others’ Stories
Through his work, Howie has met countless individuals affected by dementia, both carers and those living with the condition.
He has heard difficult stories about:
- Challenges before diagnosis
- Experiences after diagnosis
- Gaps in clinical care
- Ongoing lack of coordinated support
But he also highlights something often overlooked: people with dementia can still live meaningful lives. With the right support and community connections, there are opportunities for engagement, social interaction, and purpose.
Building a Central Hub for Support
One of Howie’s most impactful contributions has been the creation of SussexDementiaVoices.org.
The idea is simple but powerful: bring together all available dementia support services in one accessible place.
The website includes:
- A map of local dementia services across Sussex
- Links to support organisations
- Practical advice for carers
- A dedicated care section with guidance and FAQs
What started as a small directory quickly grew. Initially listing around 40–50 services, the platform now features over 150, and continues to expand.
Many of these services are run by volunteers, small charities, and community interest companies, reflecting the quiet but remarkable work happening at a local level.
A Fragmented System
Through his work, Howie also identified a major issue: inequality in access to dementia services depending on where you live.
Some areas, such as Chichester, benefit from integrated centres offering memory assessments and multiple support services under one roof. Other areas have far fewer resources.
This “postcode lottery” means that access to support can vary dramatically, leaving many families at a disadvantage.
The Importance of Community and Connection
One of the key messages Howie emphasises is the importance of reducing isolation.
For people living with dementia,and their carers, staying socially connected is vital. Community groups play a crucial role in maintaining wellbeing and should, in his view, be actively recommended by healthcare professionals.
He even suggests that GPs should “prescribe” attendance at local dementia groups as part of care plans.
Campaigning for Change
Some parts of Sussex have stronger dementia support, while others struggle within a complex, delayed health system. Sussex Dementia Voices aim to mobilise local voices and campaign for transparent dementia care, including more Admiral Nurses, so every family in Sussex can access specialist face‑to‑face support.
Raising Awareness and Reaching More People
To expand the reach of his work, Howie is now distributing information about Sussex Dementia Voices to GP surgeries across the region. The goal is simple: make sure more people know where to turn for help.
Because if there’s one thing his story makes clear, it’s this:
Support does exist but far too many people don’t know where to find it.
Dementia CareSussex Dementia Voices
