Driving, Work and Money With Younger Onset Dementia

Driving, work and money with younger onset dementia

There is a window after a dementia diagnosis in which the person can still make their own decisions, and almost everything consequential should happen inside it.

Enduring power of attorney. Enduring guardianship. A will. An advance care directive. An insurance claim. A conversation about where they want to live and what they want at the end. Each of these is straightforward while capacity is clearly intact, and each becomes a tribunal application, a disputed document or an irreversible loss once it is not.

The window is also shorter than people assume, because for younger onset dementia the average diagnostic delay is around four years — so a person arriving at diagnosis has often already spent the easy part of that window being told they were depressed.

This guide is about getting the consequential things done in the right order. It is not legal or financial advice, and most of what follows warrants a solicitor.

The order

If you do nothing else from this guide, do these, in this sequence, in the first month:

1. Check superannuation for income protection and total and permanent disability cover. Do this today.
2. Do not resign from employment. Take leave.
3. See a solicitor about enduring power of attorney, enduring guardianship and a will, while capacity is documented.
4. Apply to the NDIS if under 65. The deadline is a birthday.
5. Deal with driving.
6. Make an advance care directive.

Everything below expands on those.

Money, and the things that cannot be undone

Superannuation: income protection and TPD

Most people do not know they hold these, and they are frequently the single most valuable asset in the situation — considerably more than the Disability Support Pension.

Check your superannuation statement for income protection — sometimes called salary continuance — and total and permanent disability (TPD) cover. Many default super arrangements include both.

What to check: the waiting period; the benefit period, where two years versus to age 65 is an enormous difference; whether the disability definition is “own occupation” or “any occupation”, the latter being much harder to satisfy; and whether there are pre-existing condition exclusions.

Two things that catch people out.

Cover usually ends with employment. So claims should be lodged while still employed wherever possible. This is the single most expensive mistake available in the first weeks.

Policies bought after diagnosis will exclude dementia. Existing cover is what you have, so do not let it lapse while sorting everything else out.

TPD claims for dementia are usually more straightforward than for fluctuating conditions, because progression and permanence are not in dispute — but they require medical evidence and they take months. Start early.

Work

Most people with younger onset dementia are working when symptoms begin, and most lose that work badly — through performance management, before anybody knows why.

Do not resign. Resigning frequently forfeits income protection cover, TPD cover, sick leave, and the employer’s legal obligation under the Disability Discrimination Act 1992 to make reasonable adjustments. Take leave instead and decide later.

If performance is already being managed, get advice quickly — from a union if you are a member, or a community legal centre. A performance process that is actually a disability being managed as a conduct problem is a different legal situation, and disclosure changes the obligations.

Adjustments are available, and for dementia they look like: reduced hours, a change of role to something with fewer novel demands, written rather than verbal instructions, one task at a time, a quiet workspace, more time, a mentor or buddy, and removal of safety-critical duties. JobAccess on 1800 464 800 advises both employees and employers and administers the Employment Assistance Fund, which pays for workplace modifications.

And be realistic. Dementia is progressive, so a return to work is usually a managed wind-down rather than a recovery. Planning that deliberately — reduced hours, then a role change, then finishing on terms, with the insurance claimed properly — produces a far better outcome than being exited unprepared.

Protecting money from impaired judgment

Impulsive spending, scams, giving money away and gambling all occur, and in frontotemporal dementia they can be catastrophic and early. See frontotemporal dementia.

Act structurally rather than by persuasion:

• A limited-balance account for independent spending, so autonomy is preserved and exposure is capped
• A second signatory above a threshold
• Transaction alerts to a trusted person
• Removing credit cards and reducing limits
• Putting the Do Not Call Register and scam blocks in place
• Automatic payments for bills so they do not depend on memory

Graduated arrangements beat removal. Stripping an adult of all financial control after one bad decision is common and usually disproportionate — and it is also what people with dementia report as the most humiliating thing done to them.

Other financial things to check

Mortgage and loan hardship provisions. Lenders have hardship obligations and will frequently restructure.

Superannuation early release on compassionate or severe financial hardship grounds, which should be a last resort given what it costs later.

The Disability Support Pension, which requires a condition fully diagnosed, treated and stabilised, an impairment rating of 20 points or more, and a continuing inability to work 15 hours a week. Dementia generally satisfies the “stabilised” requirement more readily than fluctuating conditions, though the diagnosis needs to be settled. Rejections are common and reviewable for free.

Carer Payment and Carer Allowance for the partner, through Services Australia — frequently unclaimed.

Energy and rates concessions, and the Companion Card in some states.

One more point, because it trips up almost everybody: NDIS funding is not money to live on. It buys disability supports and nothing else — not rent, not groceries. A person can hold a substantial plan and have no money.

The legal documents

The most important section, and the one most often left too late.

Enduring power of attorney

Appoints somebody to make financial and legal decisions. “Enduring” means it continues to operate after the person loses capacity, which is the whole point.

Done while capacity is clearly intact, this is a straightforward appointment that the person makes themselves, choosing who, with whatever conditions and limits they want.

Done after capacity is lost, it cannot be done at all — instead somebody applies to a state tribunal for a financial administration order, which is slower, more expensive, adversarial if the family disagrees, and results in somebody being appointed by a tribunal rather than chosen by the person.

Enduring guardianship

Appoints somebody to make personal, health and lifestyle decisions — where the person lives, what services they receive, medical treatment. The terminology differs by state (enduring guardian, medical treatment decision maker, enduring power of attorney for personal matters), which is one reason to use a solicitor rather than a template.

Same logic: made by the person while they can, or imposed by a tribunal later.

A will

Make or review it while capacity is unambiguous. Ask the solicitor to document how capacity was assessed on the day, because a will made after a dementia diagnosis is more vulnerable to challenge, and contemporaneous evidence of capacity is what defends it. Some solicitors will arrange a capacity assessment by a GP or specialist alongside.

An advance care directive

Records what medical treatment the person does and does not want in future, including at the end of life. Names, formats and legal status differ by state.

This is the document that most often prevents suffering, and it is the one families most often say they wish they had. Specific things worth addressing: hospital admission, antibiotics, artificial feeding, resuscitation, and where the person wants to die.

It is not a pessimistic act. It is the mechanism by which the person’s own preferences govern what happens when they can no longer state them.

A practical note on all four

Do them together, in one appointment, with one solicitor, soon after diagnosis. It costs a few hundred to a couple of thousand dollars and it is the best money spent in this entire situation.

Get certified copies, give one to each appointed person, tell the GP and the hospital, and keep one somewhere findable. A document nobody can locate at 2am in an emergency department does no work.

Driving

The conversation that arrives earlier than anybody is ready for.

You must notify your state or territory driver licensing authority of a condition that may affect driving. That obligation sits on the driver, and telling the GP does not discharge it. Doctors in some jurisdictions also have reporting obligations or discretion.

Dementia does not automatically mean the licence goes immediately. In early dementia some people continue driving for a period with review, and the assessment is individual.

What stops driving is less about memory than about judgment, reaction time, divided attention, visual processing, and insight. Insight is the dangerous one, because somebody who cannot perceive their own impairment will continue regardless.

The assessment is an occupational therapy driving assessment — an off-road component covering vision, reaction time, cognition and insight, and an on-road component in a dual-control vehicle with an OT and a driving instructor. You generally pay for it unless private health or an NDIS plan covers it, and if driving matters it is worth getting into the plan as a goal.

The consequences of not notifying are serious: driving without clearance can mean criminal charges after an accident and no insurance cover, which for an at-fault accident is potentially financially catastrophic.

When the person will not stop

A genuinely hard situation and worth being practical about.

Externalise the authority. It is far more workable for the prohibition to come from an institution than from a family member — the licensing authority has suspended the licence, the doctor has reported, the insurer will not cover it. This keeps you out of the role of the obstacle, which preserves the relationship.

Make sure the medical notification actually happened. Families sometimes assume it did.

Practical measures where the risk is immediate: the keys not being available, the car being sold or moved, disabling the vehicle, or in some cases the licence being formally cancelled.

Replace the function, not just remove it. Loss of driving is a genuine bereavement, particularly where it also ends work and independence. Council community transport, taxi subsidy schemes, NDIS transport funding and support worker time for community access all exist. A person who loses driving and gets nothing in return becomes isolated fast.

Talking about the end, early

The conversation people most want to avoid and most regret avoiding, and it belongs in a guide about decisions because that is what it is.

Dementia is a terminal condition. Saying that plainly is not pessimism — it is what makes it possible to plan, and the people who plan have better deaths and less distressed families.

What is worth discussing while the person can take part:

Where they want to be. Home, a supported living arrangement, or a facility. Being specific matters, because the default is whatever has a bed during a crisis.

Hospital admission. Many people with advanced dementia do not benefit from acute hospital admission and are harmed by it — delirium, deconditioning, infection, distress. A documented preference for treatment at home where possible changes what happens at 2am.

Antibiotics, and whether they want them for recurrent chest infections late in the disease.

Artificial feeding. The evidence does not support tube feeding in advanced dementia improving survival or comfort, and a documented position prevents a decision being made under pressure by people who do not know what the person wanted.

Resuscitation.

Palliative care, which is not only for the last weeks. Palliative involvement in advanced dementia improves symptom management — pain, breathlessness, agitation, secretions — frequently for a long period, and most people are referred far too late or not at all.

Organ and brain donation, which some families find meaningful, particularly where research is involved.

Record it in an advance care directive, give copies to the appointed decision-maker, the GP and the hospital, and tell the family what it says so nobody is surprised.

And one thing for the person themselves, if they are reading this: writing down what you want is one of the last genuinely powerful acts available to you in this condition. It is worth doing properly, and it is worth doing now.

The insurance and superannuation claims, in order

This is the part with real money in it, and the part most often got wrong because of sequence rather than substance.

Find every policy first. Total and permanent disablement cover and income protection are frequently inside superannuation rather than held separately, and people routinely do not know they have them. Check every super fund the person has ever belonged to, including old ones they stopped contributing to, and request the product disclosure statement for each.

Read the actual definition before lodging anything. TPD definitions differ: some turn on being unable to work in your own occupation, others on any occupation you are reasonably suited to by training and experience. Which definition applies can change the outcome entirely, and an insurer applying the stricter test to a claim framed for the looser one will decline it.

Lodge income protection before resigning, not after. Many policies require the claim to arise while employed. Resigning first can extinguish a valid claim, and this is one of the most expensive mistakes available in this situation.

Get the medical evidence written to the definition. A letter saying “diagnosed with younger onset dementia” is not the same document as one addressing capacity for the specific work tasks the policy describes. Give the specialist the policy wording and ask them to address it.

Expect it to take months and keep records. Dates, names, and every piece of correspondence.

Get help rather than doing it alone. A financial counsellor is free. Many community legal centres handle insurance disputes, and specialist superannuation and insurance lawyers generally work on a no-win-no-fee basis for TPD claims. If a claim is declined, the Australian Financial Complaints Authority is free to use, and declined claims are overturned often enough to make the complaint worth lodging.

And check Centrelink in parallel. Disability Support Pension, and Carer Payment or Carer Allowance for the partner. These are separate from insurance and from the NDIS, and the person may be eligible for all three.