Katie and Dad
As an informal dementia carer, you’re always finding ways to brighten up the lives of those you care for. This could look like enrichment activities or valuable down time. Many use media to capture special memories and small moments during this period of life, such as Katie, who runs the Instagram page @dadanddolly. This visual archive of her father, who suffers from Alzheimer’s disease, documents his daily life with his dog, Dolly, and has created a community along the way. But what is Katie’s story as a carer, and how has social media helped along the way? Katie gives us all the answers…
“My first foray into the caring world began as a teenager because I had to look after my mum, who had motor neurone disease. More recently, it started in 2021, when I realised my father’s memory was going and he was struggling to manage his day-to-day life. He was getting thinner, and I realised he couldn’t manage on his own anymore, so I moved him in next door to me as a way to keep an eye on him, support him, and provide him with company and structure.”
Where did the idea for the ‘Dad and Dolly’ page come from?
Dad and Katie with their dogs, Dolly and Mouse
“That happened because I was already filming my dad. One, because it was very sweet, and two, because my mum died when I was 20 – and that was in the 90s. There wasn’t this thing of having lots of videos, so I don’t have many captures of her and her voice. I found one video with her voice in it, and it took my breath away, because I haven’t heard it for 20 years, so I really feel strongly about documenting normal life with your family.
I was doing that and was posting them on my personal Instagram and then a friend of mine, who was a PR guy I used to work with, said, “Why don’t you start an Instagram account to show the videos of your caring experience with your dad and the joyful moments?” I was already doing some other work to try and get people to prepare for their parents getting older and navigate this time of life, so that it’s more joyful and less stressful for everyone. My dad was happy to do it. I asked for his permission. It’s been a nice creative outlet for me, and it’s a way for me to have community because people are nice and kind and write lovely messages. It’s nice to be able to share this time with other people, because it is such a lonely experience for both people with dementia and their carers.”
Dad holding Katie as a baby
What are the biggest lessons you’ve learnt from caring for your dad?
“I think there are lots of lessons you get when you care. One is just how difficult it is to manage caring and having a career and ambition. I guess on a broader level, the biggest lesson is how shamefully undervalued care is in Western society. How invisible it is, how isolated you are when you become a carer. On a more personal level, I’ve learned to become truer to myself, which has been a good thing, so there have been good lessons from care in that sense. It’s been a test of my patience and integrity; I’ve learned that I’m a good carer and not everyone is. I don’t think everyone has the skills to be a good carer, in the same way that not everyone has the skills to be a CEO of a big corporate company.
Caring is sacred in my opinion; it’s a wonderful thing that we can do for each other as humans, and it’s the foundation of a good society. You need the balance for things to work, but carers need support and community, and they need to be considered incredibly valuable. I wonder if it’s because people often associate care with feminine qualities. I just don’t think you can have a society without good care because you can’t raise good children, you can’t support people into life or out of life, and we all want it. You need to value it in order to receive it.
Another lesson is that I’ve learnt to really get to know my dad. I think that one of the lovely things about care is that you really get to know someone, and that is a wonderful feeling. To know them inside and out, to know what makes them tick, to know that you can help them live well through a difficult time. It goes two ways.”
What difference do you think you’ve made to your dad’s life?
Dad and Dolly
“The way I think about this is: ‘what would happen if I wasn’t here?’ I think he’d be very lonely. I think he’d really struggle with his symptoms. I think he’d be constantly frustrated, and that’s if he was still here; I don’t even know if he would be. I think by being a carer for my dad, I’ve enabled him to continue living as well as he possibly can with a difficult disease. I’ve helped him stay connected to the community, which is incredibly important for anyone with dementia.
You need to facilitate connection, social interaction, and joy, and be able to live life as well as you can for as long as you can, and feel valued. I don’t take over, I only support him to do the things he can still do, and I allow him to take care of me in the way he can, even if it’s just making a cup of tea.”
Whilst you support him, in what ways are you supporting yourself?
“Like a lot of carers, I did stretch myself too much and came very close to burnout. I had to take a step back, learn not to put too much pressure on myself and make time for myself for self-care. I have self-care Saturdays, which I mostly stick to, it’s not always on a Saturday, but just finding a way for someone else to care for me and to care for myself. Even exercising is very important, that really helps to manage stress. Being creative and doing creative stuff really helps me to deal with all of this. I would definitely like to have more community and more support but it’s just very difficult, particularly in London, it’s very fast paced.”
What do you wish more people knew about dementia?
“Certainly, in the case of Alzheimer’s, it’s not just memory loss. Dementia has lots of different symptoms, which means that someone finds it difficult to live, whether that’s understanding instructions or remembering how to do things. Also, people with dementia have value and are still able to do lots of things, even if they have short-term memory, particularly in the first stages of dementia. People shouldn’t take over; you should still support people to continue the things that they can still do. I think it’s also important to remember that it can happen to any of us and to remember how you would want to be treated if you had it.
Often people who aren’t around someone with dementia all the time might talk to them on the phone or see them for an hour and think that they’re fine because that person with dementia is quite stimulated by that visit or that call and therefore, they may be functioning a bit better and that can often make the carer feel undervalued. To see how dementia is really affecting someone, you have to be around them quite a bit.”
Younger Katie and Dad
There’s a lot we can learn from the experiences of other dementia carers. Positive outlets, such as Katie’s, can recharge us and ease the load of caring for someone else. It is important that, as carers, we continue to share our stories with the wider community to bring us closer and make caring easier for everyone involved. If you want to share your story or any tips, reach out to info@nationaldementiacarersday.co.uk and use #NDCD2025 on social media. Stay tuned for more care profiles.
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