Families, Partners and Children: Younger Onset Dementia at Home

Families, partners and children: younger onset dementia at home

An estimated 1.7 million Australians are involved in caring for someone with dementia. Almost none of the material written for them is written for a 48-year-old woman whose husband has frontotemporal dementia and whose children are 12 and 15.

That is the gap this guide tries to fill. It is the least clinical thing in this series and probably the most useful, because the thing that determines how younger onset dementia goes is rarely the medicine. It is whether the family around the person is still standing in three years.

Why this is different from caring for a parent

Caring for an older parent with dementia is hard and it is a recognised social role. Caring for a partner in your forties or fifties is a different thing, and the differences are not acknowledged anywhere.

You are losing a peer, not a parent. The relationship was reciprocal. There was a shared future being planned. The loss is of a co-pilot, not of an elder.

It arrives in the middle of everything. A mortgage. Children at home. Two careers, one of which is ending. Ageing parents you were expecting to care for, who may now be caring for you. There is no financial or temporal slack in a household at that life stage.

Nobody your age is going through it. Peer support groups for dementia carers are attended largely by people in their seventies caring for spouses in their eighties. The experience is not comparable and sitting in that room can be isolating rather than supportive.

The person may have full insight, particularly early, which means you are caring for somebody who understands exactly what is happening and what is coming. That is harder, not easier.

The duration is longer. Younger onset dementia often runs for a decade or more — the Sydney FRONTIER work found average survival in behavioural-variant frontotemporal dementia of 10.4 years from symptom onset. That is a very long time to sustain an unsupported arrangement.

And the years before diagnosis were worse. Most families describe the pre-diagnosis period as the hardest part: watching somebody change, being told it is depression or stress or the marriage, and in many cases privately concluding that their partner had simply become selfish. The average younger onset diagnostic delay is around four years. That is four years of a relationship deteriorating with no explanation available.

The grief with no ritual

The concept families reach for most often, and the one clinicians name least.

The person is alive. There is no funeral, no condolence, no casserole, no socially sanctioned mourning, and no point at which anybody acknowledges that something enormous has been lost. Yet the relationship that existed is gone, and in frontotemporal dementia — where empathy goes before memory — it can be gone early and completely while the person is still walking around the house.

What families report about this:

They feel they are not permitted to grieve. Saying “I’ve lost my husband” about a man sitting in the next room produces awkwardness, so people stop saying it.

The grief is not linear and it recurs. Each new loss — the driving, the work, the conversation, the recognition — arrives as a fresh bereavement, and there is no run-up.

Guilt attaches to everything. Guilt for being angry. Guilt for wanting it over. Guilt for enjoying a day away. Guilt at feeling relief when a placement happens. All of it common and none of it discussed.

Relief and love coexist, which people find shameful and which is entirely ordinary.

The thing worth saying, because families say nobody said it to them: anticipatory grief is a real phenomenon with a name, it is not disloyalty, and it does not mean you love the person less. Counselling with somebody who understands dementia rather than generic bereavement support is the intervention, and it is funded — Carer Gateway on 1800 422 737 provides free counselling, coaching, peer support and respite planning.

The relationship

The honest version, because the sanitised one is useless.

Partners become carers before any physical care starts. The shift happens at the moment you begin managing the medication, checking the bank account, or answering for the other person in a conversation. It is rarely discussed and it changes the register of everything.

Intimacy changes, in several directions at once. Reduced libido is common. So, less often discussed, is disinhibited or increased sexual behaviour, which in frontotemporal dementia can be distressing and difficult. Some partners find physical intimacy becomes impossible once the relationship has become custodial; some find it is the last thing that still works. All of these are reported and none of them are unusual. A rehabilitation physician, a continence nurse or a psychologist will discuss it if asked, and almost nobody asks.

Resentment runs both ways and is almost never voiced. The person resents being managed. The partner resents the loss of the person they married and the absence of any choice. Both are reasonable and both feel unspeakable.

Separation happens, and it happens more with frontotemporal dementia, because loss of empathy removes the thing that makes a marriage feel like a marriage. People who leave are judged by people who have not lived it. It is worth saying plainly: continuing to love somebody does not oblige you to be destroyed by the situation, and arrangements where the person is supported by paid workers and the partner remains a partner are better for both than arrangements where the partner collapses.

What helps, concretely:

Separate the roles — have a support worker do personal care so you can be a spouse rather than a carer. Many couples describe that as the thing that preserved the relationship.

Protect one activity a week that is not care, therapy or appointments.

Get your own counselling, in your own right, not as an adjunct to the person’s care.

Use respite before exhaustion rather than after.

And talk to people in the same situation and the same decade.

Children

The part with the least guidance available and the highest stakes.

Tell them

Children know something is wrong long before anybody tells them, and in the absence of information they construct explanations that are worse than the truth: that it is their fault, that their parent does not love them anymore, that somebody is dying imminently, or that the adults are lying about something terrible.

Age-appropriate honesty is the approach. Not a single conversation — an ongoing one, in instalments, revisited as they get older and as things change.

Younger children need simple, concrete, repeated information: Dad’s brain is sick, it makes him forget things and sometimes makes him say unkind things, it is not your fault, nobody catches it, and you will always be looked after.

Older children and teenagers need more, including honesty about progression, and they need the chance to ask whether it is genetic. Where there is a familial mutation, that question is real and deserves a proper answer involving a genetic counsellor rather than reassurance.

Both need permission to have their own feelings, including anger and embarrassment, and to have a life that is not organised entirely around the illness.

What children in these households actually carry

Reported consistently and worth naming so it can be addressed:

They become carers. Often invisibly — prompting, supervising, covering, managing a parent’s behaviour in public. This is young carer status and it is frequently unrecognised, including by the family.

They are embarrassed, especially teenagers, and then guilty about being embarrassed. Disinhibited behaviour in front of friends is brutal at fifteen.

They lose the well parent too, to exhaustion and to the logistics of care.

They stop bringing friends home.

Their schooling and plans get disrupted, sometimes including decisions about university or moving out that get deferred or abandoned.

They grieve a parent who is still alive, with no framework for it.

What helps

Young carer support. Carer Gateway on 1800 422 737 covers young carers, and Carers Australia and state carer organisations run young carer programs. School counsellors and the school itself should know — a student whose parent has dementia is entitled to consideration, and schools generally respond well when told.

Their own counselling, separate from the family’s.

Peer contact with other young people in the same situation, which is the thing they most consistently say helped.

Protected normal life. Sport, friends, part-time work, the things that are theirs.

Explicit permission to leave. Teenagers in these households sometimes stay out of duty when they should be going to university. Saying out loud that they are allowed to go matters.

Honesty about the genetic question where it applies.

And keeping the relationship with the parent going, adapted. Doing something together that still works — music, a drive, a walk, watching sport — matters more than conversation that has become difficult.

For the extended family and friends

A short section to forward to people who want to help and do not know how.

Do not disappear. Friends drift faster than family, not from unkindness but from awkwardness. The thing people most want is for someone to keep turning up.

Be specific. “Let me know if you need anything” transfers the work to the exhausted person. “I’m taking the kids Saturday morning” is help.

Offer practical things. A meal. A lift. Mowing. Sitting with the person for two hours so the partner can leave the house.

Keep inviting them, even when they keep declining.

Do not offer cures. Coconut oil, supplements, a clinic overseas, a documentary somebody watched. Families find this exhausting and it implies they have not tried.

Do not say “he seems fine to me.” You saw him for forty minutes on a good day, in a quiet room, talking about the past, which is the part that still works.

Talk to the person, not about them.

Ask the carer how they are, and then wait for a real answer.

Where the actual support is

Collected, because most of it is free and most of it is unused.

Carer Gateway — 1800 422 737. Free counselling, coaching, peer support, respite planning and emergency respite. Covers young carers. The most under-used service in this whole area.

National Dementia Helpline — 1800 100 500. Free, 24 hours, run by Dementia Australia, and it covers younger onset specifically.

Dementia Support Australia — 1800 699 799. Free, 24 hours, for changed behaviours, in the community as well as residential settings.

Dementia Australia younger onset programs, and Young Dementia Australia (YoDA) for age-appropriate peer connection.

Carer Payment and Carer Allowance through Services Australia. Frequently unclaimed.

Short Term Accommodation through an NDIS plan, for respite, used before exhaustion.

Lifeline — 13 11 14, which belongs on this list, because carer distress in this situation is severe and suicide risk is elevated among both people with younger onset dementia and their carers. If you are at that point, call.

The practical load, and how to reduce it

Beyond the emotional weight, there is a volume of administration that nobody warns families about and that falls on the person with the least spare capacity.

What it consists of: the NDIS application and then the plan reassessments; the insurance claims; the solicitor; the licensing authority; the employer; Centrelink; the bank; the specialists and the GP; the providers; the school; and the endless re-explaining of the same situation to each new person.

Things that genuinely reduce it:

Get a support coordinator early, and treat it as the point of the plan rather than an add-on. For dementia the coordination load rises while the person’s capacity to manage it falls, which is exactly the situation coordination exists for.

Make one document and reuse it. A two-page summary — diagnosis, dates, current function, medications, who is involved, what support is in place — sent ahead of every appointment. It prevents the same history being reconstructed verbally fifteen times.

Keep one folder, physical or digital, with every report, letter and assessment. You will need them repeatedly, and obtaining them later is harder than keeping them now.

Put everything in writing with services, and keep the replies. It is slower once and faster thereafter.

Set up automatic payments for everything that can be automated.

Delegate specific jobs to specific people. Relatives who want to help are usually useless at “let me know if you need anything” and good at “can you handle the Centrelink claim.”

Accept that some things will be done badly or late. The administration is not the care, and a family that burns itself out getting the paperwork perfect has made a bad trade.