Planning ahead after a dementia diagnosis

Dementia is progressive, and capacity to make decisions declines with it — unevenly, over time, and at different rates for different kinds of decision.

Which means there is a period after diagnosis during which a great deal can still be arranged by the person themselves, and that period is finite.

Acting early is the single most consequential thing a family can do.

What to do first

Powers of attorney. Both financial and, where the jurisdiction provides for it, health and welfare.

These must be made while capacity remains, and capacity for making a power of attorney is frequently present in the early stages.

Once it is gone, the alternative is a court process that is slower, more expensive, more restrictive and supervised. Families who leave this discover it at the worst moment, and it is entirely avoidable.

Do this within weeks of diagnosis, not months.

Review or make a will. Testamentary capacity may be present early and will not remain so. Where a will is made after a diagnosis, a contemporaneous capacity assessment is strongly advisable, since the will is otherwise vulnerable to challenge.

Advance directive. Recording wishes about future treatment while able to express them.

This matters particularly in dementia, where decisions later in the illness — about feeding, about hospital admission, about treating infections — are difficult and frequently arise.

Record wishes more broadly. Where they would want to live, what matters to them, what they enjoy, what distresses them, their routines, their history.

This document becomes enormously valuable to care staff later, and several structured formats exist for exactly this purpose.

The conversations to have while they can

What would they want if they could no longer live at home?

What treatments would they not want in later stages?

Who should make decisions?

What would make life feel worth living, and what would not?

Are there things they want to do, see, or say while they still can?

These are difficult conversations and they are considerably easier now than they will be, and the alternative is a family guessing for years.

Involving the person

The principle that matters most: capacity is decision-specific and it fluctuates, and a diagnosis does not mean someone cannot decide.

Many people with early dementia retain capacity for most decisions for a considerable period, and removing autonomy prematurely is both wrong and harmful.

Involve them for as long as they can participate, in whatever way they can. Simplify information rather than withholding it. Choose good times of day. Accept decisions you disagree with, where capacity is present.

The practical arrangements

Simplify the finances. Consolidate accounts, set up direct debits for regular bills, and remove complexity that will become unmanageable.

Address driving, which is difficult and frequently urgent. Requirements to notify licensing authorities differ by jurisdiction and generally exist. This is a common source of conflict and it is a genuine safety matter.

Address vulnerability to fraud. People with cognitive impairment are targeted, and financial abuse is common. Consider call blocking, mail preference services, spending limits, and alerts on accounts.

Look into benefits and support early. Entitlements exist in most countries and are frequently unclaimed.

Find out what local services exist — day centres, memory clinics, dementia advisers, carer support. Register before they are needed.

What families find hardest

The disagreements about how much to intervene. One family member wants to take over, another wants to preserve independence. Both are motivated by care.

Watching risk. Independence involves risk, and a person with capacity is entitled to take it. This is genuinely difficult for families.

The gradual loss, frequently described as grieving someone who is still present. This is a recognised phenomenon and it is real, and it is exhausting in a way that acute bereavement is not, because there is no endpoint and no permission to mourn.

The change in relationship, from child to carer, from spouse to carer.

Later-stage decisions

Certain decisions arise repeatedly and are worth anticipating.

Hospital admission, which is frequently distressing and disorienting for someone with dementia and which is not always beneficial. Many people record a preference to be treated where they are wherever possible.

Treating infections, where the balance between benefit and burden shifts as the illness progresses.

Eating and drinking difficulties in advanced dementia. Clinical guidance generally does not support tube feeding in advanced dementia, on the evidence that it does not improve outcomes and carries burdens, and careful hand feeding is generally recommended.

Knowing this in advance spares families a decision that feels like starving someone.

Resuscitation, which should be discussed rather than arising in a crisis.

The thing worth saying

The window after diagnosis is a genuine opportunity. Families who use it — powers of attorney, a will, an advance directive, recorded wishes, and several honest conversations — describe the following years as difficult and navigable.

Families who do not spend those years in courts, guessing, and arguing.

The difference is a few weeks of work, done early.

This is general information, not legal or medical advice. Capacity frameworks, powers of attorney and driving notification requirements differ by jurisdiction. Seek advice promptly after diagnosis.