There are many uncertainties when it comes to dementia, but one thing is certain: as the disease progresses, the need for support increases. Many carers make sacrifices over time—skipping weekly coffee with friends, dropping Zumba classes, or missing visits to the grandchildren. These little losses accumulate until the carer’s own wellbeing is at risk.
It’s human nature to put on a brave face and for many people it’s very difficult to ask for help - especially from friends and family members. However the one universal truth when it comes to caring is this: If you, the carer is okay, the person you support is okay.
If you don’t put something back into your tank and intentionally find your ‘pockets of joy’ - seeing friends, doing exercise, helping others - then there is a higher risk of burnout and premature admission into residential care, which often comes at a staggering cost.
This was a lesson I learned firsthand. When my Dad could no longer meet Mum’s needs, she came to live with us for two years. It wasn’t easy, but we were able to manage thanks to an incredible team of Personal Assistants (PAs) who helped her stay active, engaged, and independent.
What is a Personal Assistant?
A Personal Assistant (PA) is someone who provides tailored, one-to-one support to help individuals with dementia maintain their independence and quality of life. PAs are self-employed and offer highly personalised care and adapting to changing needs. They can assist with a wide range of tasks, from helping with personal care and household chores to outings and help to continue hobbies. Most importantly, PAs provide companionship and consistency, which is invaluable for people living with dementia.
Here is how PA’s helped me as a carer and my Mum.
Independence: Maintaining Routine and Dignity
My Mum’s identity was tied to her role as a homemaker. Dementia made sequencing tasks like cooking or cleaning difficult, but she still wanted to contribute and did not want to feel like someone was ‘looking after’ her. We worked with a PA, Myra, who helped Mum clean and prepare meals twice a week. This gave Mum a sense of purpose and dignity. As her needs grew, Myra transitioned to helping with personal care, ensuring Mum felt supported at every stage.
Person-Centred Care: Keeping Life Enjoyable
We wanted Mum to keep doing the things she loved— walking in the woods, visiting charity shops, doing arts and crafts or enjoying coffee and cake. Her PA, Jackie, took her out for three hours at a time, giving Mum the exercise and stimulation she needed while giving us a much-needed break. Mum would often return home with gifts she had made during outings—necklaces, coasters, and butterfly magnets—that brought her so much pride and joy. These outings weren’t just activities; they were a way for Mum to remain the loving and creative person she always was.
Familiarity: Building Trust and Understanding
Good PAs build strong relationships with their clients, creating familiarity and consistency that reduces anxiety and confusion. Mum’s PAs took the time to get to know her, which became invaluable as her condition worsened. When she could no longer communicate verbally, her PAs could “translate” her behaviors, drawing on their understanding of who she was before dementia.
Flexibility: Adapting to Changing Needs
PAs are self-employed and typically provide flexible support tailored to your schedule. However, they need a reliable income, so try to commit to regular hours. It’s important to build a team of PAs rather than rely on just one person to ensure continuity of care during illness or holidays.
Cost and Planning Ahead
The cost of a PA ranges from £18–£22 per hour plus travel expenses. Over time, as Mum’s needs grew, we expanded from one PA for three hours a week to a team covering 8am–6pm on weekdays. While this was costly, it allowed Mum to remain at home, and we were able to share the workload. Anyone who is living with dementia is eligible to apply for an Attendance Allowance, a non means tested benefit which pays out £72.65 a week.
Lessons Learned
One critical lesson was the importance of having a backup plan. Agencies charge higher rates (£30 - £40 per hour) because they guarantee staff availability. With self-employed PAs, you must build a network to ensure someone is always available if your primary PA is unavailable.
Reflection: Cherishing the Journey
In December 2023, Mum spent her last Christmas with us before moving to a care home. Although she had always insisted she wanted to stay at home, she found peace in her new environment. I believe she subconsciously knew how much caring for her was affecting us, and she didn’t want us to break down. Nine months later, on 29th September 2024, Mum passed away with her family by her side.
Caring for someone with dementia is never easy, but with the right support, it’s possible to navigate the challenges while cherishing the moments of joy and connection. For us, the PAs were not just helpers—they were a lifeline, allowing Mum to live her life with dignity and happiness for as long as possible.
We’ve worked on a crib sheet which we hope you find useful to bring in the help you need to live the way you want for longer.
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