Every day, 12,000 people in the UK become unpaid carers for a partner, family member, or friend. It's a responsibility that can be both rewarding and incredibly challenging. In October 2022, The Filo Project’s free and personalised Filo Family Support Service was launched to help meet the growing needs of clients’ families. Many of these family carers felt isolated and overwhelmed, often risking burnout and grappling with the grief of losing a future with their loved one that they once envisioned.
Each family is paired with a dedicated support worker who offers regular check-ins, signposting to wider support services such as financial or social services, and, most importantly, emotional support. At the heart of what we do is a belief: with the right support, both people living with dementia and their families can continue to lead meaningful lives.
The Filo Project’s Family Support Lead, Jane Chamberlain, has identified three main areas where families often seek help. Here, Jane shares her insights and advice on how best to support carers:
1. Needing Someone to Talk To
Caring for a loved one with dementia can be a very lonely experience for many people, and even when they have friends and family around, most carers tell us that they often feel isolated. Almost every carer tells us they want someone they can talk to who understands the situation and what it is really like caring for someone with dementia. Many family carers feel no one has time to listen or have been offered completely impractical advice.
Advice:
If you have a friend or relative who is a carer, one of the best gifts you can give them is your time and undivided attention. Ask them how things are going and really listen to what they are saying without offering opinions or advice unless they ask for it.
2. Coping with Change
Coping with change can be very challenging for carers. Often they can’t do many of the things they used to. For example, if the person they care for has problems with mobility and coordination, they may no longer be able to go out for walks together, or they may be unable to leave the person they look after on their own, so their ability to socialise and do things that they enjoy is limited.
Advice:
Many carers have been used to living a very independent life and are reluctant to ask for help from others as they don’t want to burden or upset family and friends. Very few ask for help even when others offer. They tell us that they "just have to make the best of it", or "this is what my life is now."
If you are able to support someone who is caring for someone with dementia, look for ways that you can offer practical help directly. It is easier to say yes to "I can come and sit with your husband while you go to the hairdresser's tomorrow," than it is to respond to "Let me know if I can help.”
3. Grief and a Sense of Loss
Their loved one is still there, but many carers grieve for the person their loved one used to be, for the future they had planned together, and for the loss of their lifestyle and independence. It’s very normal for their feelings and grief to change from day to day.
Advice:
We encourage carers to talk about times in the past when they have been grieving and what coping strategies have worked well for them. We remind them that emotions go up and down and some days will be more difficult, but they will pass. We discuss their innate strength and resilience, thinking back to how they cope when things are challenging and how they will get through difficult times.
We encourage carers to take care of their physical and mental health, so they will be better able to cope in their caring role. It is fine to rest when they need to and to listen to what their body needs. We discuss how, when we are feeling anxious or stressed, it is not always wise to trust our thinking. It is better to wait until our thinking settles before making complex or difficult decisions.
We aim to draw carers’ attention to what is going well and how much they are achieving every day. Often, negative thinking can overshadow all the positives in a carer's life, and it is good to be reminded of this.
At The Filo Project, we believe that carers deserve the same level of care and understanding that they provide to their loved ones. Whether it’s a listening ear, practical help, or emotional support, there are many ways to make a meaningful difference in a carer’s life. This Carers Rights Day, let's support those who dedicate themselves to caring for others.
You can find out more about Carers Rights Day, here: https://www.carersuk.org/news-and-campaigns/our-campaigns/carers-rights-day/
If you’re caring for a loved one with dementia and feel that some extra support would be helpful, our friendly team is here to listen. Call us on 0333 939 8225 or reach out via our website to explore how we can support you.