Sharing about dementia

Someone I follow on Instagram, who has been sharing her mother’s dementia journey, was trolled and took some of her posts down. People said she was being disrespectful by showing what was happening in the advanced stages of her mum’s illness.

I find her posts full of love and care. I understand that they may be difficult for some people to encounter, especially as her mother appears to be nearing the end of her life. But for people like me, who are watching our own loved ones move through this illness, I can’t stress enough how important it is to see this reality reflected somewhere.

Firstly, because it makes us feel less alone on what can be an incredibly isolating journey. Dementia affects around 900,000 people in the UK, and yet it can still feel strangely invisible in everyday life. Families often find themselves quietly adapting, withdrawing, or protecting their loved one’s dignity in ways that can unintentionally lead to isolation. Organisations like Alzheimer’s Society and Dementia UK have done so much to raise awareness, but stigma and discomfort still linger.

I wish we could find more ways to fully integrate people living with dementia into our society – not as people hidden away, but as people still present, still themselves, still deserving of visibility and connection. There has been progress, but there is a long way to go.

Secondly, because I don’t know where we’re going on this journey. Seeing others share gives me some sense of what may lie ahead. It isn’t always easy to witness, but it makes the unknown less frightening. Dementia is not a single, predictable path, and the uncertainty can be one of the hardest parts.

Recently, I tried to understand more about how dementia leads to death. I realised that I didn’t really know. Dementia is a progressive, life-limiting condition, though people often die from complications related to it rather than the disease alone. As it advances, the brain gradually loses the ability to manage the body’s basic functions – swallowing, movement, immunity. This can make people more vulnerable to infections, or mean they slowly stop eating and drinking as the body begins to shut down.

No one had really explained this to me before. It sometimes feels as though death is something we are not supposed to talk about, even when we know it is coming. We’ve talked about practical decisions like Do Not Attempt Resuscitation orders and advance care planning, but not about what dying itself might actually look like.

Seeing others share these experiences – carefully, respectfully – has helped me prepare emotionally. What I saw was not something frightening so much as a quietening. More sleep. Less engagement with the outside world. A gradual turning inward. It looked like a threshold space between this life and whatever comes next.

I understand that consent is a complex and serious issue when sharing someone’s life online, particularly when they are vulnerable. But I also think there can be dignity in visibility when stories are shared with love and care. Dementia has historically been hidden away, and that invisibility can deepen fear and misunderstanding.

At the same time, assisted dying is being debated again here in the UK. Recently, Jersey’s parliament voted to approve assisted dying for some terminally ill residents, becoming the first place in the British Isles to do so. The law will allow mentally competent adults with a terminal illness, who meet strict eligibility criteria and safeguards, to choose an assisted death with medical involvement, though it still requires further implementation before coming fully into force.

Meanwhile, similar legislation is still being debated in the UK Parliament for England and Wales. As it stands, proposals focus on mentally competent adults with terminal illnesses and would not apply to most people living with dementia, because dementia affects decision-making capacity over time.

Whatever happens with the law, it reflects something deeper – that we are beginning, however slowly, to talk more openly about dying. For families living alongside dementia, these conversations are not theoretical. They are practical, emotional, and immediate.

I don’t know what the right answers are. But I do know that we need more honesty, more support, and more compassion for people who are dying, and for the people who love them.

Have you found it useful to see what others have shared about dementia? Let me know in the comments.