Key Considerations After a Dementia Diagnosis
When someone you love is diagnosed with dementia, it can feel like the ground has shifted under your feet. There's a lot to take in, and honestly, nobody hands you a roadmap.
This page is here to change that. We've pulled together the key things that families tend to need to think about — not as a strict checklist or a timeline, but as a guide you can come back to whenever you need it. Some of this will feel relevant right now. Some of it won't be for months or even years. That's completely fine. Bookmark it, come back to it, and take things at your own pace.
A Dementia Life Guide
Administrative
Lasting Power of Attorney (LPA)
If you take one thing away from this page, let it be this: sort out Lasting Power of Attorney as soon as you can.
An LPA lets someone you trust make decisions on your behalf if you reach a point where you can't make them yourself. There are two types — one for finances and property, and one for health and welfare. Ideally, you want both.
The reason this is so important is that the person with dementia needs to have the mental capacity to set one up. If you leave it too long and their condition has progressed, you'll need to go through the Court of Protection instead, which is slower, more expensive, and a lot more stressful.
You can set up an LPA yourself through the government website (gov.uk), or a solicitor can help. It costs £82 per LPA (March 2026) to register, or you may be eligible for a fee exemption or reduction.
We've had legal professionals join our Dementia Life speaking events to walk families through the LPA process step by step — check our events page to see if there's one coming up.
Benefits and Financial Support
There's more financial help available than most people realise, and it's worth looking into early because some of these can take time to come through.
Attendance Allowance — If the person with dementia is over state pension age and needs help with personal care, they may be eligible. It's not means-tested, so savings and income don't matter.
Personal Independence Payment (PIP) — If the person is under state pension age, PIP is the equivalent.
Carer's Allowance — If you're spending at least 35 hours a week caring for someone, you might be able to claim this. It's not a lot of money, but it's something — and it can act as a gateway to other support.
Council Tax discount — People with a severe mental impairment (which includes dementia) can be disregarded for Council Tax purposes. This could mean a discount or even an exemption, depending on who else lives in the property.
Pension Credit — Worth checking if the person with dementia or their partner is on a low income.
NHS Continuing Healthcare — This is full NHS funding for people with complex, ongoing healthcare needs. It's notoriously difficult to get, but it's worth knowing about because if you're eligible, it covers the full cost of care — including in a care home.
If all of this feels overwhelming, you're not alone. A lot of families tell us they had no idea what they were entitled to.
Citizens Advice, Age UK, and the Alzheimer's Society can all help you work out what to apply for.
Wills and Advance Planning
While the person with dementia can still be involved in decisions, it's worth getting a few other things in order too.
Making or updating a will — A person with dementia can still make or change a will, as long as they can show they understand what they're doing. A solicitor can advise on this. If there's no will in place, getting one sorted now avoids a lot of complications later.
Advance care plan — This is a way of recording how the person would like to be looked after in the future. It's not legally binding, but it gives everyone involved a clear sense of what matters to them — things like where they'd want to be cared for, what activities they enjoy, what matters to them day to day.
Advance decision to refuse treatment (ADRT) — Sometimes called a "living will," this is a legally binding document that sets out specific treatments the person doesn't want. For example, they might decide they wouldn't want to be resuscitated or put on a ventilator.
None of these conversations are easy. But having them while you can means that when tough decisions come up later, you're not guessing — you're following what the person actually wanted.
Getting Your Paperwork Together
This is one of those boring but genuinely useful things to do early on. Get all the important documents together in one place where people can find them.
We're talking about things like: bank and building society details, mortgage or rental agreements, insurance policies, pension information, tax documents, the will, any existing LPA documents, and details of any regular bills and direct debits.
It doesn't need to be fancy — a folder or a box will do. The point is that when you need to find something in a hurry, you're not rummaging through drawers at a stressful time.
Driving
This is one that catches a lot of families off guard. When someone is diagnosed with dementia, they are legally required to tell the DVLA (or the DVA in Northern Ireland) and their car insurance company.
A diagnosis doesn't automatically mean they have to stop driving. The DVLA will usually arrange an assessment, and the person might be given a short-term licence that gets reviewed every year or so.
But this can be a really emotional issue. For a lot of people, driving represents independence, and giving it up feels like losing a huge part of who they are. Try to approach it with sensitivity — and know that it might be an ongoing conversation rather than a one-off decision.
Emotional
Processing the Diagnosis
There's no right way to feel about a dementia diagnosis. Some people feel devastated. Some feel relieved that there's finally an explanation. Most people feel a confusing mix of both, and that's completely normal.
Give yourself and your family time to sit with it. You don't need to have a plan by the end of the week. Talk to each other if you can — even if those conversations feel clumsy or uncomfortable. The people around you are probably feeling just as lost, and sometimes just saying "I don't know what to do next" out loud can take some of the pressure off.
If you're struggling, that's okay too. Organisations like Dementia UK have a free helpline staffed by specialist Admiral Nurses (0800 888 6678), and the Alzheimer's Society has dementia advisers you can talk things through with (0333 150 3456). You don't have to have specific questions — sometimes you just need someone who gets it.
Telling People
This one's tricky, and there's no perfect way to do it. But at some point you'll need to start letting people know — family, close friends, and depending on the situation, employers and others.
Family and friends — People react differently. Some will rally round, others might pull away because they don't know what to say. Try not to take it personally. Being open about the diagnosis tends to make things easier in the long run, even if those first conversations are hard.
Children and young people — If there are kids in the family, they'll probably pick up on the fact that something's changed. Being honest with them in an age-appropriate way is usually better than trying to shield them. There are some brilliant resources out there to help — the Alzheimer's Society has materials specifically designed for younger people.
Employers — If the person diagnosed is still working, letting their employer know means adjustments can be put in place to support them. And if you're a carer, your employer should know too — you've got legal rights around flexible working and time off for dependants that might help.
Looking After Yourself
If you're caring for someone with dementia, your own wellbeing matters just as much as theirs. We know that's easy to say and hard to actually do — but it's true.
Caring can be isolating, exhausting, and emotionally draining. A lot of carers put everyone else first and forget about themselves — and that's not sustainable.
Your health — Keep up with your own GP appointments. Eat properly. Try to get enough sleep (easier said than done, we know). If you're struggling with your mental health, please talk to someone.
Your identity — You are more than a carer. Try to hold onto the things that make you you — hobbies, friendships, interests. It's not selfish. It's necessary.
Anticipatory grief — A lot of people experience grief long before their loved one dies. Watching someone you love change and slowly lose the things that made them them is a form of bereavement in itself. If this resonates with you, know that it's completely normal and you're not alone in feeling it.
After caring ends — When the person you've been caring for dies, the grief is real and valid — but so is the strange emptiness of no longer being needed in the same way. Many former carers say adjusting to life after caring is harder than they expected. Give yourself time, and reach out for support if you need it.
Dementia Life is here for you at every stage — our online meetings give you a space to talk with other carers who get it, our speaking events bring in people with real experience to share what they've learned, and our podcast is there for the times when you just need to hear someone say "I've been through this too." You don't have to do this alone.
Building Your Support Network
You don't have to do this on your own, even though it can feel that way at times.
Dementia support groups — These can be a lifeline. Sitting in a room (or joining a call) with people who actually understand what you're going through is powerful. Your local Alzheimer's Society or Dementia UK can point you in the right direction.
Dementia Life hosts regular online meetings for families affected by dementia. They're informal, friendly, and a chance to connect with people who genuinely understand what you're dealing with — no judgement, no pressure, just honest conversation. Check our events page for the next one.
Memory cafés — Informal, social gatherings for people with dementia and their families. No pressure, no agenda — just a chance to be around others who get it.
Admiral Nurses — These are specialist dementia nurses provided by Dementia UK. They support the whole family, not just the person with dementia. Not every area has them, but you can access their helpline from anywhere.
Online communities — Forums like the Alzheimer's Society's Talking Point can be incredibly helpful, especially at 2am when you can't sleep and need to know you're not the only one going through this.
Local services — What's available varies hugely depending on where you live, but it's worth asking your local council or GP what's on offer. Day centres, sitting services, befriending schemes — there might be more than you think.
Care
Adapting Daily Life
The goal in the earlier stages is to help the person with dementia stay as independent as possible, while keeping them safe.
Around the home — Think about things like removing trip hazards, improving lighting (especially on stairs and in hallways), adding grab rails in the bathroom, and labelling cupboards or drawers. Small changes can make a big difference.
Routines — Familiar routines can be really reassuring. Try to keep things consistent where you can, while being flexible enough to adapt as needs change.
Staying active and connected — Encourage the person to keep doing the things they enjoy — whether that's walking, gardening, music, or seeing friends. Staying socially connected and physically active makes a real difference to wellbeing.
Technology — There's a growing range of assistive technology that can help — GPS trackers, medication reminders, automatic lights, door sensors. It's worth exploring what might be useful.
When Care Needs Increase
Dementia is progressive, so the level of support needed will change over time. This can happen gradually or in more noticeable steps.
Recognising the shift — You might notice the person needs more help with things like washing, dressing, eating, or managing medication. Behavioural changes like sundowning, agitation, or wandering can also become more challenging. If things feel like they're getting harder, trust your instincts — they probably are.
Reassessing support — Your local authority should review the care plan at least once a year, but you can ask for a reassessment at any time if things have changed. Don't wait for the annual review if you're struggling.
Respite care — Taking a break isn't selfish — it's essential. Respite can mean anything from a few hours with a sitting service to a short stay in a care home. If you run yourself into the ground, you won't be able to care for anyone.
Paid care at home — You might reach a point where you need professional carers coming into the home. This can be arranged privately or through your local authority, depending on your financial situation.
Considering a Care Home
This is one of the hardest decisions families face, and it comes with a huge amount of guilt for most people. But needing more support than you can provide at home doesn't mean you've failed — it means the disease has progressed.
When to start thinking about it — There's no fixed point, but common triggers include the person's safety being at risk, the carer's own health suffering, or the level of care needed going beyond what can realistically be managed at home.
What to look for — Not all care homes are the same. Look for ones with specialist dementia units, check their CQC ratings, visit in person if you can, and ask about their approach to dementia care. Talk to other families if possible.
Funding — This is complicated, and it depends on things like savings, property ownership, and whether the person qualifies for NHS Continuing Healthcare or local authority funding. Get advice from a specialist — Age UK, the Alzheimer's Society, or an independent financial adviser who specialises in care fees can all help.
Making the transition — Bring familiar things from home. Photos, a favourite blanket, familiar music. Visit regularly, especially in the early days. And be kind to yourself — this is a huge adjustment for everyone.
End of Life Planning
This is probably the section nobody wants to read, but it matters. Dementia is a life-limiting condition, and at some point, the focus of care will shift from treatment to comfort.
When does this stage begin? — It's genuinely hard to say. Some people live with dementia for many years. The later stages tend to involve more significant physical decline — difficulty swallowing, reduced mobility, increased frailty, and greater susceptibility to infections.
Advance care plans — If these were set up earlier, now is the time to make sure everyone involved in the person's care has access to them. If they weren't, decisions about things like resuscitation, hospitalisation, and where the person would want to be cared for may need to be made by family members and professionals together.
Palliative care — This isn't just about the very end. Palliative care is about managing symptoms and maintaining quality of life, and it can start well before the final stages. Your GP, the care home, or a hospice can help arrange this.
Where to die — Some people stay in their care home, some go to a hospice, some come home. There's no right answer — it depends on the person's wishes, their needs, and what's practically possible.
Supporting the family — This is an incredibly difficult time. Make sure you're getting support too — from friends, family, bereavement services, or specialist organisations.
Useful Contacts
Within this section we've signposted to a lot of other organisations. We've put the contact details for them below
Dementia UK — Admiral Nurse helpline: 0800 888 6678 | dementiauk.org
Alzheimer's Society — Dementia advisers: 0333 150 3456 | alzheimers.org.uk
Age UK — Advice line: 0800 169 65 65 | ageuk.org.uk
NHS — nhs.uk/conditions/dementia
Citizens Advice — citizensadvice.org.uk
UK Government Website — Lasting Power of Attorney, benefits information, DVLA notification -gov.uk
Dementia Life Articles
Our articles can be a great way of getting to grips with with what other people are going through and reading about dementia from the perspective of those that know.
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