The Certainty of Change: Getting the Help of a Personal Assistant

Written by Lucy Buck, CEO of The Good Company People

This article is written from my own experience of caring for my mum, who lived with dementia. Like many families, we had to navigate a lot of change, learn to ask for help, and find the right support at the right time. What I learned along the way is that bringing in a Personal Assistant can be life-changing, both for the person living with dementia and for the carer.

There are many uncertainties when it comes to dementia, but one thing is certain: as the condition progresses, the need for support increases. Many carers make sacrifices over time, skipping weekly coffee with friends, dropping exercise classes, or missing visits to the grandchildren. These small losses add up until the carer’s own wellbeing is at risk.

It is human nature to put on a brave face, and for many people it is very difficult to ask for help, especially from friends and family members. But one thing is always true: if you, the carer, are okay, the person you support is okay too.

If you do not put something back into your tank and find your own small pockets of joy, such as seeing friends, doing exercise, or helping others, there is a higher risk of burnout and early admission into residential care, which can come at a huge emotional and financial cost.

This was a lesson I learned first-hand. When my dad could no longer meet my mum’s needs, she came to live with us for two years. It was not easy, but we managed 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, or PA, is someone who provides one-to-one support to help a person living with dementia maintain their independence and quality of life. PAs offer personalised help that adapts as needs change. They can assist with a wide range of tasks, from personal care and household jobs to outings and hobbies. Most importantly, they offer companionship and consistency, which is invaluable for people living with dementia.

Here is how PAs helped me as a carer, and how they supported my mum.

Independence: Maintaining Routine and Dignity

My mum’s identity was closely 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 her a sense of purpose and dignity. As her needs grew, Myra gradually helped 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, and enjoying coffee and cake. Her PA, Jackie, took her out for three hours at a time, giving her exercise and stimulation while giving us a much-needed break. Mum would often come home with gifts she had made during these outings: necklaces, coasters and butterfly magnets that brought her so much pride and joy. These were not just activities, they were ways for her to stay connected to the person she had always been.

Familiarity: Building Trust and Understanding

Good PAs build strong relationships with the people they support, creating familiarity and consistency that reduces anxiety and confusion. Mum’s PAs took time to get to know her, which became invaluable as her condition worsened. When she could no longer communicate verbally, her PAs could interpret her needs, drawing on their understanding of who she was before dementia.

Flexibility: Adapting to Changing Needs

PAs are self-employed and usually offer flexible support tailored to your schedule. However, they need a reliable income, so it helps to agree regular hours. It is also important to build a small team of PAs rather than rely on one person. This ensures continuity of care during illness or holidays.

Cost and Planning Ahead

The cost of a PA ranges from £18 to £22 per hour, plus travel expenses. As mum’s needs increased, we expanded from one PA for three hours a week to a team covering 8am to 6pm on weekdays. While this was costly, it allowed mum to stay at home, and we were able to share the load.

Anyone living with dementia can apply for Attendance Allowance, a non-means-tested benefit worth up to £101.75 a week at the higher rate.

Lessons Learned

One key lesson was the importance of having a back-up plan. Agencies charge higher rates (around £30 to £40 per hour) because they guarantee staff availability. With self-employed PAs, you need to build your own small network to make sure someone is available if a PA is off sick or away.

It is also important to be clear about employment status. Whether a PA is employed or self-employed can be checked using HMRC’s online Check Employment Status for Tax (CEST) tool at www.gov.uk/guidance/check-employment-status-for-tax.

Reflection: Cherishing the Journey

In December 2023, mum spent her last Christmas with us before moving to a care home. Although she had always said she wanted to stay at home, she found peace in her new setting. I believe she knew how much caring for her was affecting us, and she did not want us to break down. Nine months later, on 29 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 is possible to face the challenges while cherishing the moments of connection and joy. For us, the PAs were not just helpers, they were a lifeline that allowed mum to live her life with dignity and happiness for as long as possible.

Further resources

East Sussex County Council have some excellent advice and resources on recruiting a Personal Assistant. Visit https://www.eastsussex.gov.uk/social-care/support-to-stay-at-home/care-in-your-home/recruiting-a-pa

We have created a simple crib sheet to help you bring in the support you need and live the way you want for longer.

Personal Assistant crib sheet.pdf

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