Blog: Dementia Awareness Week – “You’re Not Alone” 

A conversation with Amanda Kinsella, Lead Project Nurse at Prospect Hospice 

Dementia affects far more than the person diagnosed. It touches families, friends and carers who often provide support quietly and tirelessly. To mark Dementia Awareness Week, we spoke to Amanda Kinsella, Lead Project Nurse at Prospect Hospice, about her role, her personal connection to dementia, and why understanding and support matter so much. 

Improving Care, With Dementia in Mind 

As part of the Quality Team, Amanda’s role focuses on ensuring hospice services continue to improve for everyone who accesses them. She leads short?term projects and audits, working closely with clinical teams to strengthen good practice and embed learning. 

“We’re always asking, ‘even better if?’,” Amanda explains. “It’s about recognising the great work already happening, building on it, and making sure we can clearly evidence the quality of care we provide.” 

Amanda also leads the hospice’s Dementia Working Group, a role shaped by personal experience. After a family member accessed hospice services in 2020, she identified small but meaningful changes that could improve the journey for people living with dementia and those close to them.  

Why Dementia Awareness Week Matters 

For Amanda, Dementia Awareness Week is about connection, education and visibility. It’s a chance to work alongside partner organisations and to support carers at all stages of the dementia journey – whether they are newly adjusting to a diagnosis or facing challenges further along the way. 

On a personal level, the week is also a reminder of the importance of hospice support. “I needed these services six years ago,” Amanda reflects, “and I know I may need them again in the future.”  

Challenging Misconceptions 

Amanda is keen to challenge two common myths about dementia. 

Firstly, not all dementia is the same. Different diagnoses affect people in different ways and understanding this helps families and professionals better prepare for what lies ahead. 

Secondly, there’s a belief that hospices aren’t for people with dementia. “That simply isn’t true,” Amanda says. “At Prospect Hospice, our ethos is that everyone has the right to a good death, regardless of diagnosis – and that absolutely includes people living with dementia.”  

The Impact on Families and Carers 

Dementia doesn’t just change one life; it reshapes entire families. Amanda often sees how quickly role reversal can happen, with family members becoming carers and sometimes losing their identity as a daughter, son or partner. 

“That loss can be incredibly distressing,” she explains. “One of my key aims is to help families protect time to still be a daughter or son – and to make sure there is still laughter at home.”  

What Good Dementia Care Looks Like 

Good dementia care, in Amanda’s view, should be person?centred, compassionate and inclusive. 

“Most people don’t want to be treated differently,” she says. “They want support that recognises who they are, gives them time, and helps them maintain the skills and independence they still have. Care should be done with people, not to them.”  

Supporting Carers Through Signposting 

Many carers struggle quietly, often because they feel it is their responsibility to cope or they don’t know what support is available. While Prospect Hospice doesn’t provide direct dementia care, it plays a vital role in guidance and signposting, always shaped by the question: ‘What matters to me?’ 

The hospice also hosts a monthly memory café, working in partnership with Swindon Borough Council. This provides a welcoming space for people to connect, access information and begin building support networks.  

Advice, Wellbeing and Hope 

For those new to caring, Amanda encourages people to seek out a memory café, ask for help early and continue doing enjoyable things together. Looking after your own wellbeing is essential, particularly on what can be a long and unpredictable journey. 

If there’s one message Amanda wants people to take away this Dementia Awareness Week, it’s simple but powerful: you are not alone. Support is available, and moments of joy still matter. 

Looking ahead, Amanda feels hopeful – encouraged by ongoing research, growing awareness, and the vital role of the voluntary sector in supporting people living with and dying with dementia. 

Dementia Awareness Week reminds us that understanding, early support and compassion can make a real difference – not just this week, but all year round.