Dementia, day one

The neurologist's office had a print of a yacht on the wall, and I stared at it for the entire ten minutes it took her to say the word out loud. Mum was in the chair next to me, hands folded, watching the doctor's mouth. The doctor said "consistent with early-stage Alzheimer's disease." Mum nodded, once. I nodded with her. The yacht didn't move. The drive home was quiet in a way the rest of our lives would later turn out to be quiet, a quiet that has work hidden inside it.

Day one of a parent's dementia diagnosis is its own thing. Most of what you read about dementia is written for year three or year five, when the symptoms are loud and the decisions have already been made. Day one is different. Day one is the day the future shifts shape and you have, for a small window, the rare luxury of choosing where to put your hands.

What's confirmed on day one

The diagnosis itself confirms a small set of things and leaves a much larger set unanswered. You need to know which is which, because the temptation is to spiral on the unanswered ones and forget to act on the confirmed ones.

What's confirmed:

• A neurodegenerative process is underway. It will not reverse. It will progress.
• The progression is, broadly, toward more memory loss, more confusion, and over time, behavioural and personality change
• The speed of progression is variable and not yet known for your parent
• The specific subtype (Alzheimer's, vascular, Lewy body, frontotemporal, mixed) shapes the trajectory in ways that matter clinically
• Capacity (legal, financial, medical) is currently intact but on a downward curve, and the curve isn't linear
• The household will become, gradually, more dependent on a primary caregiver, and that caregiver is usually a family member
• The cost trajectory, eventually, lands in the residential care or high-level home care range

What is not yet known:

• How fast. Some parents decline over twelve years, some over four
• Whether the type variant has specific features (Lewy body has hallucinations; frontotemporal often presents with personality change before memory loss; vascular often progresses in steps tied to small vascular events)
• Whether there are concurrent conditions accelerating the picture (depression, sleep apnoea, B12 deficiency, thyroid issues)
• How well the current household setup will cope with the next twelve months
• What capacity your parent has, as of today, to participate in their own forward planning

The first practical task is to separate the two lists in your own head. Act on the confirmed. Don't pre-grieve the unknown. The pre-grieving will come anyway. It does not need an invitation.

The first practical moves, in the first six weeks

Day one is the only day you have where every door is still open. By day ninety, some of them will already have started to close. The sequence below is the one I wish someone had handed me on a single sheet of paper.

The first appointment is with a GP you trust who will become the coordinator. Not a different specialist for each problem. One GP who holds the whole picture, who has the memory clinic letter on file, who books the next review, who refers when needed. If your parent's current GP is a fifteen-minute appointment factory, this is the time to switch.

The second appointment is a medication review. Half the drugs older Australians take were started in 1998 and never stopped. Anticholinergics in particular (some bladder medications, some sleep aids, some antihistamines) measurably worsen cognition. A pharmacist-led Home Medicines Review through your GP is a Medicare-rebated service. Book it.

The third appointment is with the parent's solicitor, with the parent in attendance, while capacity is intact. Three documents need to exist or be refreshed.

• Enduring power of attorney, financial. Names someone (often a child, sometimes a professional) who can make financial decisions when the parent can't. Without this, the only path is a state-tribunal-appointed administrator, which is slow, expensive, and impersonal.
• Enduring guardianship (or enduring power of attorney for personal matters, depending on the state). Names someone for medical and lifestyle decisions.
• Advance care directive. The parent's own statement of what kind of medical care they do and don't want at end of life. This document is the single most underused piece of paper in Australian aged care, and it is the document that prevents the worst hospital scenes when capacity is gone.

The will should also be reviewed at this appointment. Not because the diagnosis changes the will's content, but because a will signed after a dementia diagnosis can be challenged on capacity grounds, and you want a contemporaneous solicitor's note confirming capacity at the time of signing.

The fourth practical move is to ring My Aged Care, 1800 200 422, and start the ACAT assessment process. Even if your parent is independent now. The waiting list is real. You want the assessment done while the parent is at the higher-functioning end of their curve, because the package, once approved, sits on file and activates when needed.

The fifth move, and most families skip this, is a household audit while capacity is intact. Where are the bank accounts. Where is the super. Who is the financial adviser. What's the password for the email and the My Gov account. What's in the safe deposit box. Where is the title deed to the house. The audit takes a Saturday afternoon. Doing it now, with your parent at the kitchen table walking you through it, is humane. Doing it after capacity has slipped is forensic.

The sixth move is the conversation about the future, on terms the parent can still own. What would you want if. Where would you want to live. Who do you want making decisions. What matters to you. The conversation is hard. It is also the only conversation that will, in three years, mean you're carrying out their wishes instead of guessing. Record it (with their consent) on your phone. The recording is a gift to your future self.

The behavioural change nobody warns you about

Memory loss is the headline. Behavioural change is the part that breaks families.

Personality change in dementia is real and common. The kind, mild parent can become irritable and suspicious. The reserved parent can become disinhibited. The careful parent can become reckless with money. These changes are the disease, not the person. Understanding that, in advance, is the difference between feeling betrayed by your parent and feeling sad for your parent.

The specific behaviours to watch for, and the specific responses that help:

• Repetitive questioning, which is anxiety not malice; respond with the same calm answer each time
• Sundowning, the late-afternoon agitation that is biological; reduce stimulation, increase light, keep routines tight
• Suspicion and accusation (especially around stolen items), which is the brain failing to lay down memories; don't argue, redirect
• Withdrawal from things they used to love, which can be genuine apathy or covert masking of disability; differentiate gently
• Driving, which is the single hardest conversation; book the medical driving assessment through the GP early and let the assessor be the bad guy
• Money spent on scams, telemarketers, online subscriptions; quietly take the credit card and replace it with a low-limit card while explaining nothing in detail
• Continence accidents, which are deeply private to the parent; never comment in front of others, never react with disgust

The principle, the one that holds across all of these, is that you stop arguing with the disease. You meet the parent where they now are. You don't drag them back to where they were last year, because they can't get there.

The caregiver who isn't yet a caregiver

The other person on day one is the spouse, your other parent, who has just been told their partner has dementia and is now, by default, the primary caregiver. They will not say so. They will say "we'll be fine." They will not be fine.

Spousal caregivers in dementia have higher rates of depression, illness, and mortality than the patient. This is documented, robust, and ignored. The single highest-value thing you can do for the household, on day one, is to set up structures that protect the well partner: a weekly day of respite, a fortnightly coffee with their own friends, a counsellor or peer support group, and someone (often you, or a sibling) who rings them once a week to ask not how Mum is but how they are.

Day one is the day you have the most CHOICES. You will not have this many again. Use the window. Map first. Move later. The work is humane when it is early.