Planning for the Future

Why plan now

Dementia is progressive, and the ability to make legal decisions called mental capacity usually fades gradually. Most of the planning tools on this page rely on the person still having capacity at the time they set them up. If things are left until a crisis, the options narrow sharply: a court-appointed deputyship rather than a Lasting Power of Attorney, decisions made for someone rather than by them.

Planning is not about assuming the worst. It is a gift of clarity to the person with dementia, to the people around them, and to their future selves. Done well, it usually brings relief. Things that were shapeless and frightening become specific and manageable.

Having the conversation

Talking about the future when someone has just been diagnosed with dementia feels hard. It can also feel like a relief. Most people want to be asked what matters to them and most of us find it easier when the conversation is gentle, a little at a time, rather than one big sit-down.

• Pick a quiet moment, not a stressful one. Avoid evenings if that's when confusion is worst.
• Start with stories, not forms.'What was most important to Dad?', 'What did Mum always say she'd hate?'
• Ask small, specific questions. 'If you ever couldn't manage at home, where would you want to be?', 'Who would you trust to help with money?', 'What music would you want around you?'
• Write things down as you go, however roughly. Memory will fade; the notes won't.
• Let silences happen. Let the conversation stop and come back later.

If it feels too hard to start, organisations like Marie Curie and Compassion in Dying both publish gentle conversation guides.

Lasting Power of Attorney (LPA)

An LPA is the legal document that lets someone (the donor) choose one or more people (their attorneys) to make decisions on their behalf if they later cannot. There are two types, and most people set up both.

• Property and financial affairs LPA paying bills, running bank accounts, buying and selling property. Can be used, with the donor's permission, as soon as it is registered.
• Health and welfare LPA where to live, day-to-day care, medical treatment, life-sustaining treatment. Can only be used once the person has lost capacity to make the decision themselves.

You can make an LPA yourself through the Office of the Public Guardian at gov.uk/power-of-attorney, or ask a solicitor to help. A registration fee applies, with discounts and exemptions for people on low incomes.

Choosing attorneys

Attorneys must be 18 or over and must act in the donor's best interests. Pick people who know the donor well, whom the donor trusts, and who will be willing to take on the responsibility. Two or three attorneys can act jointly, or separately, or a mix, it's worth thinking carefully about how they should make decisions.

Preference and instructions

The LPA form lets the donor write preferences (things they'd like their attorneys to take into account) and instructions (things the attorneys must or must not do). This is where values really do come through: I prefer to stay at home for as long as it is safe; please consult my brother on big decisions.

If capacity has already gone

If the person can no longer understand what an LPA is, an LPA can't be made. Instead, a family member can apply to the Court of Protection to become their deputy. It is slower, more expensive and more paperwork than an LPA, one of the reasons this section comes with a small nudge to act early.

Advance care planning

An advance care plan is simply a conversation, written down, about how someone wants to be cared for in the future. It may sit alongside an LPA but does different work. There are three overlapping documents to know about.

Advance statement of wishes

A statement of wishes, values and preferences, what matters, what brings comfort, who should be consulted, the food, music, routines, faith, pets, people that make life feel like life. It is not legally binding, but it must be taken into account when decisions are made for the person. It is arguably the most important single document a family can write. A template is just a piece of paper; the thought behind it is the gift.

Advance decision to refuse treatment (ADRT)

Sometimes called a 'living will'. It sets out specific medical treatments the person wants to refuse in future circumstances, for example, not wanting to be resuscitated, or not wanting artificial feeding if they are permanently unable to eat and drink. If properly written, witnessed and specific, an ADRT is legally binding on doctors. Compassion in Dying publishes a free, careful template.

ReSPECT plan

Increasingly used across the NHS. A ReSPECT plan is a conversation with a clinician about what kind of care would be right in an emergency. It records the person's values and treatment preferences on a single form that travels with them into hospital, into ambulances, into care homes. Ask the GP whether one is already in place.

Wills and estate

A will sets out what happens to a person's money, property and possessions after they die. If someone dies without one, the estate is divided by the rules of intestacy, which often do not match what the family assumed.

• A solicitor is worth the money, especially if the estate is at all complicated. Age UK runs a free wills month in some areas; the Law Society can help find a local solicitor.
• The person making the will must have testamentary capacity, they must understand what they own, who they are choosing to benefit and the effect of the will. This is a slightly different test from LPA capacity.
• Consider writing a letter of wishes alongside the will. It isn't legally binding but gives context who gets which ring, what to do with the dog, which charity mattered most.
• Keep a simple list of accounts, pensions, insurance policies, subscriptions and passwords in a secure place, and tell the attorneys and executors where to find it.

Decisions in the later stages

As dementia progresses, decisions shift from 'what does the person want?' to 'what would the person have wanted?' and eventually 'what is in the person's best interests now?'

The Mental Capacity Act 2005 provides the framework for these decisions. Know Your Rights guide for the five key principles. A few practical pointers for the later stages:

• Capacity is decision-specific. Someone may have the capacity to choose what to eat but not to decide about a house sale.
• Best-interests decisions should involve the person as much as possible, and anyone who knows them well.
• The least restrictive option that keeps the person safe is the right one.
• A good health and welfare LPA, or a Court-appointed deputy, is the person who speaks for the donor in these conversations.

Driving

A diagnosis of dementia does not automatically stop someone driving, but the driver must inform the DVLA and their insurer. The DVLA will ask for a medical report and may require an assessment. Giving up driving is often one of the hardest losses; a calm conversation, booking taxis in advance, learning the bus timetable and offering lifts can all soften the transition.

Staying at home versus moving on

Most people with dementia want to stay at home. For many, it is possible for a long time with the right support. For others, there comes a point when home no longer feels safe or kind, for them or the carer. That decision is almost never clear-cut. A good GP, a community mental health team or an Admiral Nurse can help weigh it up.

Choosing a care home

Finding the right care home takes time, time families often feel they don't have. Starting to look before it is urgent makes a huge difference.

Types of home

• Residential care provides personal care (help with washing, dressing, meals and medication).
• Nursing care adds round-the-clock qualified nursing.
• Specialist dementia units (often called EMI Elderly Mentally Infirm) are trained and built for people with advanced dementia.

What to look for on a visit

• The feel of the place. Calm? Noisy? Is there laughter? Are residents engaged or parked in front of the telly?
• How staff speak to residents, especially the ones who can't answer back.
• How many staff are on shift, and the staff-to-resident ratio on night shifts.
• Activities that look meaningful (gardening, music, pets, a small job to do) rather than just 'entertainment'.
• Bedrooms: can residents bring their own things? Photos, a chair, a quilt?
• Food: where is it eaten, is there choice, are people helped to eat if they need it?
• How the home handles the end of life do residents stay there? Is there GP support? Is the family welcomed day and night?

Checks before you choose

• Look up the most recent Care Quality Commission inspection report.
• Visit more than once, at different times of day, and ideally at mealtimes.
• Ask about fees, what's included, what isn't, and how fees will rise.
• If the council is paying, understand any top-up being asked of the family and get it in writing.

The practical money side, self-funding, deferred payment agreements, NHS Continuing Healthcare, is covered in our Benefits and Finances guide.

End of life and afterwards

Dementia is a life-shortening illness. It is helpful, though difficult, to know that and to prepare. Many families find the last stage kinder than they had feared, particularly when plans have been made calmly, in advance.

Palliative and hospice care

Palliative care is about comfort and quality of life rather than cure. It is not only for the final days. Dementia services, community nurses and hospices increasingly offer support well before the end, at home, in care homes and in day settings. Ask the GP or district nurse to make a referral.

The last days

In the last weeks and days, people often sleep more, eat and drink less, and become very peaceful. Good care focuses on keeping them comfortable: mouth care, gentle touch, familiar voices, favourite music. Many people have a sense of choosing when to go, sometimes waiting for a visitor, sometimes slipping away in a quiet moment.

Funeral plans and practicalities

• Writing down wishes for a funeral, burial or cremation relieves a lot of pressure from the family. Hymns, readings, flowers or no flowers, charity instead, all of it helps.
• A prepaid funeral plan can spread the cost; the Financial Conduct Authority now regulates them, which has helped standards a great deal.
• After a death, registering it in the first five days in England is the starting point. The Government's 'What to do after someone dies' guide walks you through the steps.
• Tell Us Once, offered by most local councils, notifies most government departments with a single conversation.

Grief before and after

Families affected by dementia often speak of a long goodbye. You may grieve the person you knew long before they die — their voice, their opinions, the way they used to greet you. This is sometimes called anticipatory grief, and it is very real.

After a death, grief often comes in waves: relief, sorrow, guilt, tiredness, love. All of it is allowed. Please do not carry it alone. Cruse Bereavement Support, your GP, your faith community or friends who have walked this road can help. We can too, many of the people in our network have been where you are.

This page offers general information, not legal, financial or medical advice. For anything important, please speak to a solicitor, a regulated financial adviser, or your GP.