When It Happens to You: Reflections on Life with Dementia

Written by Sally Ferris, Chief Executive Officer

As the holiday season comes and goes, many adult children look back and realise that a parent is changing and that dementia might be part of the picture.

Dementia is affecting more people in the UK and around the world, largely because we’re living longer. As a dementia professional, I’m deeply committed to helping people live well with dementia, and to upholding the personhood of those affected, right through to the end of life.

At the same time, I know from experience that life with dementia doesn’t have to be all doom and gloom. With strong relationships, supportive networks, and opportunities for achievement and enjoyment, people with dementia can still have fun, contribute, and bring joy to others.

However, I must be honest: dementia can change personality and behaviour, sometimes dramatically, and this can bring heartache and frustration.

Over the past year, I’ve spent a lot of time caring for my own elderly parents, both showing different signs of dementia alongside physical frailty. My dad, for example, sometimes furniture-walks around the house because he forgets to use his walking aids. He can be bad-tempered if you’re too assertive, and insists he’s taken his tablets even when he hasn’t. Yet he’s also affectionate and grateful for the support he receives.

My mum presents a different challenge. She lacks awareness of her short-term memory difficulties. Sometimes she admits that “my brain is just full up,” but other times she becomes angry at the suggestion that she needs help and says “we’re not stupid, you know!” She rarely expresses gratitude and can even resent interventions, oblivious to the domestic tasks my husband and I quietly manage for them.

Caring for them has been an emotional roller coaster. I’ve cried, laughed, felt grateful, and then felt frustrated and exhausted again. I now understand what so many other carers have told me: life with dementia is unpredictable and emotionally intense. While I take satisfaction in moments that make my parents happy, like preparing a meal they enjoy, the countless micro-dramas fill much of my mental space, even though they’re invisible to those who haven’t experienced caring firsthand.

The impact of dementia is different for everyone. It depends on factors like family dynamics, finances, work situations, the relationship you have with your loved one, and the particular ways dementia manifests. I’m fortunate to live miles away from my parents, so I don’t face the expectation of full-time caregiving, but that distance also brings worry and the inability to respond immediately to crises. And yet, my parents are fortunate, too. Dementia has only come to them in their late 80s and early 90s.

Even after 15 years in the dementia field - studying it, working with it, advising carers - I constantly have to remind myself to pause, reflect, and accept what I cannot change. I can’t fix their brains, but I can adapt, accept compromise, and allow some risk. Care homes might offer safety, but moving them now would take away their agency and independence.

I must also cultivate patience and kindness, recognising that my parents are doing their best, and that negative words or behaviours are unsurprising given their frustrations. Dementia affects the brain’s ability to inhibit these reactions.

Everyone caring for loved ones with dementia deserves support. They need people to listen empathetically, ideally others in similar situations. Understanding that certain behaviours are symptoms, and not personal affronts, can make a huge difference. Breaks, help from friends or services, and seeing a loved one enjoy life lift carers’ spirits, even if only briefly.

Until dementia can be prevented, social and emotional support is the most effective help we can provide. That’s exactly what Together Dementia Support offers: a listening ear, peer support for carers, advice, and weekly activity sessions for people with dementia to enjoy time outside the house.

Dementia is on the rise, and the cost to society is growing. We urgently need more community-based and care home support, so that family carers are not left alone to shoulder the burden. Only when caregivers have options, understanding, and support can we all live a little more happily, despite dementia.