Just Diagnosed With Dementia: First Steps for the Family

A dementia diagnosis, whether it is your mother, your father or another loved one, can feel like the ground shifting beneath your feet. It is frightening and overwhelming, and it can be very hard to know what on earth to do first.

If you are reading this in the raw days after a diagnosis, take a breath. You do not have to do everything at once. You are not alone in this. And there is a great deal of help, support and hope ahead. Here are some gentle first steps for the family, to help you find your footing.

First, be kind to yourselves

Before any practical task, give yourselves permission to feel whatever you are feeling. A diagnosis is a shock, and it is completely natural to feel fear, grief, anger, and a sense of being overwhelmed. Take time to absorb it. Talk as a family. Lean on each other, and on people you trust.

And please hold onto this, because it matters more than almost anything else right now: a dementia diagnosis is not the end of a good life. Many people live well, and happily, with dementia for years, especially with understanding, support and the right help. This is the beginning of a new chapter, not the end of the story. There is still much good living, love and connection ahead.

Understand the diagnosis

Once the initial shock settles a little, understanding what you are dealing with helps to replace fear with knowledge. It is worth talking to the GP, memory clinic or specialist to understand the type of dementia, whether any treatments or medications might help, what support is available, and what to expect. Do not be afraid to ask questions.

For reliable, reassuring information, turn to trusted sources such as the Alzheimer's Society and Dementia UK, rather than frightening yourself with less reliable corners of the internet. Good information is genuinely steadying.

Connect with support early

You really do not have to navigate this alone, and reaching out early makes everything easier. There is a whole world of dementia support out there, including the Alzheimer's Society and Dementia UK, whose Admiral Nurses specialise in supporting families through dementia, as well as local memory cafes, dementia groups, and dementia advisers who can guide you through what lies ahead.

Making these connections early, before you feel you desperately need them, means you will have support and knowledge in place as you go.

Sort the legal groundwork, and do it soon

This is one of the most important early steps, and it is genuinely time-sensitive, so it is worth acting on sooner rather than later.

While your loved one still has the mental capacity to do so, it is really important to put a Lasting Power of Attorney in place, both for health and welfare and for property and financial affairs. This allows a trusted person to make decisions on their behalf if they later become unable to. Crucially, it can only be set up while your loved one still has capacity, which is exactly why doing it early matters so much.

Alongside this, it is worth getting finances organised, checking which benefits your loved one is entitled to, such as Attendance Allowance, and making sure a will is in place. Attending to these things calmly and early saves an enormous amount of difficulty later. Our guides to Lasting Power of Attorney and decision-making and Attendance Allowance may help.

Have the important conversations now

While your loved one is able to be fully involved, it is precious to talk gently with them about their wishes for the future: how and where they would want to be cared for, what matters most to them, and their preferences and hopes.

These conversations are far better had now, early and unhurried, than left until they become harder. Knowing your loved one's wishes, in their own words, is a gift to the whole family, and lets you honour what they want as things change.

Focus on living well, now

Here is something vital, and hopeful. A diagnosis does not mean life stops, or that everything changes overnight. In the earlier stages especially, life can carry on richly and happily.

So encourage your loved one to keep doing the things they enjoy, to stay active, social and engaged, and to maintain the routines that anchor their days. Living well with dementia is absolutely possible, and focusing on that, rather than only on what may come, is good for everyone. Our guides to staying mentally active and keeping routines and rituals alive offer ideas.

Plan ahead, gently

Dementia does change over time, so it is wise to think ahead about the support that may be needed, calmly and without panic. This is not about dwelling on the difficult parts, but about being prepared, so you feel ready rather than caught out.

Knowing what help is available, and having a sense of your options, means you can face each stage with confidence. Care and support can grow gradually with your loved one's needs, so there is no need to have everything worked out at once.

Look after the whole family

Dementia affects everyone who loves the person, not just the person themselves. Family carers, in particular, need looking after too. So please do not neglect your own wellbeing as you support your loved one, and try to get help early, rather than waiting until you reach crisis point. Supporting yourselves is part of supporting them.

You do not have to do it all alone

As your loved one's needs change over time, support will be there, from family and community help to professional care, including live-in care that can help someone stay living in their own home for as long as possible. Whatever lies ahead, you will not have to face it entirely by yourselves.

One step at a time

A dementia diagnosis is daunting, but you do not have to have it all figured out today. Take it one step at a time. Be kind to yourselves, lean on the help that is available, get the important foundations in place, and, above all, focus on living well and cherishing the time together. With support, understanding and love, your family can navigate this journey, and there is still so much good life and connection to come.

If you would like to talk through how we support people living with dementia and their families, now or in the future, we would be very glad to help. The Alzheimer's Society and Dementia UK are also there for you at every step.

Book a free care advice call, or give us a ring on 020 3970 9900.

This guide offers general information and is not medical or legal advice. For guidance tailored to your loved one, please speak to their GP or healthcare team, a specialist dementia organisation, and, for legal matters, a qualified solicitor.