Getting a Dementia Diagnosis: The Pathway and What to Insist On

Getting a dementia diagnosis: the pathway and what to insist on

The average delay in diagnosing younger onset dementia in Australia is around four years.

Four years of being told it is stress, depression, menopause, alcohol or a difficult patch in a marriage. Four years in which somebody is frequently performance-managed out of a job, a relationship deteriorates, financial decisions get made badly, and — the part that matters most — the window for the person to participate in planning their own future narrows.

Diagnosis in dementia does not come with a treatment that stops the disease. Which leads some clinicians, and some families, to wonder whether it is worth pursuing. It is, for reasons that have nothing to do with drugs, and this guide sets out the pathway and what to push for at each stage.

Why a diagnosis is worth having

Before the process, the case for going through it.

It replaces a character verdict with a medical one. This is the one people name first. Before diagnosis, the explanations available are all accusations — you are unmotivated, careless, selfish, drinking too much, not trying. A diagnosis ends that, for the person and for everybody who has been quietly judging them.

It identifies the treatable mimics. A proportion of people investigated for dementia turn out to have something else, and some of those things are reversible. Not pursuing the diagnosis means not finding them.

It names the cause, which determines management. Cholinesterase inhibitors help some people with Alzheimer’s and can worsen frontotemporal dementia. People with Lewy body dementia can have severe reactions to antipsychotics. Vascular dementia means aggressive risk factor control. “Dementia” alone does not tell you any of that.

It opens the funding door, and the door has a deadline. You must become an NDIS participant before your 65th birthday, and you cannot apply without a diagnosis. For somebody at 61 with four years of unexplained change, the diagnosis is the gate. See dementia and the NDIS.

It allows the person to decide things while they can. Enduring power of attorney, enduring guardianship, a will, an advance care directive, and conversations about where they want to live and what they want at the end. All of these require capacity, and all of them are better done by the person than for them. This is the most time-sensitive argument and the one most often left too late.

It gets the family the right information, and stops them managing a situation they have misunderstood.

The pathway

Start with the GP, and prepare for it

The GP appointment is where this succeeds or stalls, and the single biggest determinant is what you bring.

Write a chronology before you go. Dates, or approximate dates, and specific examples. Not “her memory is getting worse” but:

“March — missed two mortgage payments despite direct debit being set up, had not noticed. June — lost on the way home from the shops, a route she has walked for eleven years. August — stopped cooking entirely; previously cooked every night. September — accused me of moving her keys; this is new. Throughout — asks the same question within minutes of being answered.”

Two pages of that changes an appointment completely.

Bring an informant. For most dementias, and absolutely for frontotemporal dementia, the person cannot give a reliable history because insight is impaired. The partner, sibling or adult child is the diagnostic instrument here.

Be candid about psychiatric and alcohol history rather than protective. Australian research on frontotemporal dementia misdiagnosis specifically noted that psychiatric histories were frequently downplayed by patients and informants — which makes the picture harder to read, not easier.

Book a long appointment and say what it is for.

Ask for the things by name: bloods, imaging, and a referral.

What the GP should do

A cognitive screen — the MoCA, RUDAS or similar. Useful for flagging impairment and genuinely poor at detecting executive dysfunction and the frontal presentations, which is why a normal score does not close the question.

Blood tests to exclude the treatable: full blood count, electrolytes, calcium, glucose and HbA1c, thyroid function, liver and kidney function, B12 and folate, vitamin D, and syphilis and HIV serology where indicated.

A medication review. This deserves its own line. Anticholinergic burden is a well-documented, reversible cause of cognitive impairment, and it accumulates quietly across prescriptions — bladder anticholinergics, older antihistamines, tricyclic antidepressants, some antipsychotics, some Parkinson’s medications. A pharmacist-led review is cheap and occasionally resolves the whole question.

Screening for depression and for sleep apnoea. Both common, both treatable, both capable of producing a convincing imitation.

Brain imaging — CT at minimum, and MRI is considerably more informative and is what you want for a younger person.

A referral, and which referral matters enormously.

Who to be referred to

This is the decision that most affects how long diagnosis takes, and GPs are not always clear on the distinctions.

For someone under 65: a cognitive neurologist, a neuropsychiatrist, or a specialist memory and cognitive disorders clinic that sees younger onset and atypical presentations. Not a general geriatric assessment, which is calibrated for older people and Alzheimer’s-type presentations, and not a general psychiatrist unless they have specific cognitive expertise.

For someone over 65: a geriatrician or a memory clinic. Most states have public memory clinics with waiting lists, and private geriatricians are generally faster.

Where behaviour or psychiatric symptoms dominate: a neuropsychiatrist or an old age psychiatrist, who sit at exactly the intersection where frontotemporal dementia hides.

Where language is the problem: a cognitive neurology service, with speech pathology involvement, because primary progressive aphasia needs specific expertise.

If you are in a rural or regional area, ask about telehealth cognitive assessment, which has expanded substantially and is better than waiting eighteen months.

What the specialist will do

A detailed history, including from the informant, which is why bringing the chronology matters as much at this stage.

Neuropsychological assessment. Several hours with a neuropsychologist, mapping each cognitive domain separately. This is the keystone document — for the diagnosis, for the NDIS, for decisions about driving and work, and for establishing a baseline against which later change is measured. For suspected frontotemporal dementia, ask specifically whether social cognition and executive function are being assessed, because standard batteries may not cover them well and the Sydney research on bvFTD criteria recommends social cognition as a core feature.

MRI, looking at the pattern of atrophy. Worth knowing: early dementia can have normal-looking imaging, and Australian research on bvFTD misdiagnosis found that over-interpretation of neuroimaging was the commonest cause of false positives. A scan is evidence, not a verdict, in either direction.

FDG-PET in some centres, showing patterns of reduced metabolism.

Amyloid and tau biomarkers — PET or cerebrospinal fluid — where distinguishing Alzheimer’s pathology matters. Availability and cost vary considerably in Australia.

Lumbar puncture in some cases, particularly where an inflammatory or infectious cause is possible.

Genetic testing with counselling where there is family history, particularly in younger onset and frontotemporal presentations. This has implications for children and for insurance and should go through a genetic counsellor.

The twelve things that must be excluded

A checklist, because each is common, each produces cognitive impairment, and each is treatable:

1. Delirium — acute, fluctuating, caused by infection, dehydration, medication, pain or constipation. A diagnosis of dementia made during delirium is unreliable.
2. Depression
3. Medication effects, especially anticholinergic burden
4. Obstructive sleep apnoea
5. Thyroid dysfunction
6. B12 and folate deficiency
7. Alcohol, including Wernicke-Korsakoff syndrome — see alcohol-related brain injury
8. Normal pressure hydrocephalus — the classic triad is gait disturbance, cognitive change and urinary incontinence, and it is treatable with a shunt
9. Subdural haematoma, which can be chronic and present with confusion weeks after a minor fall
10. Hearing and vision loss, which produce apparent cognitive decline and are routinely uncorrected
11. Metabolic and endocrine causes — calcium, glucose, liver, kidney, and in some cases pituitary dysfunction
12. Autoimmune encephalitis, which is rare, increasingly recognised, can present psychiatrically, and is treatable

A rule worth carrying: anything that developed over days or weeks is not dementia. Dementia is months to years. Sudden onset means something else, and something else is usually treatable.

What to ask at the diagnosis appointment

Prepare these, because people leave the appointment having absorbed almost nothing.

• What type of dementia, and how confident are you? “Dementia” without a cause is an unfinished diagnosis, particularly under 65.
• What was ruled out, and is anything still outstanding?
• What should we expect over the next one to two years?
• What medication is and is not appropriate for this type? Specifically: are cholinesterase inhibitors indicated or contraindicated, and is there any antipsychotic sensitivity to know about?
• Can we have a letter stating the condition is progressive and irreversible? This is the sentence the NDIS needs.
• Can we have a letter about capacity, for the solicitor, and what does it say?
• What do you advise about driving, and have you notified or do we?
• Is a neuropsychological assessment being done, and can we have a copy?
• Should we see a genetic counsellor?
• Who coordinates from here, and when do we see you again?
• What should prompt us to contact you sooner?

And ask for a copy of every report. You will need them for the NDIS, for insurance, for legal documents, and for the next clinician, and obtaining them later is considerably harder.

Bring someone, and write it down

Two practical points that sound trivial and are not.

Nobody absorbs a dementia diagnosis appointment. Take a second person, take notes, and ask whether you can record it. Most clinicians will agree.

Ask for a written summary in plain language, and ask what you may share with family.

After the diagnosis

The first month, in order of time-sensitivity:

1. Apply to the NDIS if under 65. The deadline is a birthday and it does not move.
2. See a solicitor about enduring power of attorney, enduring guardianship and a will, while capacity is clearly documented.
3. Check superannuation for income protection and total and permanent disability cover, and do not resign from employment without advice.
4. Call the National Dementia Helpline on 1800 100 500. Free, 24 hours, run by Dementia Australia, and it covers younger onset.
5. Deal with driving rather than letting it drift.
6. Tell the people who need to know, in the way the person wants.
7. Get the carer registered with Carer Gateway on 1800 422 737.
8. Find peer contact, and for younger onset look for age-appropriate groups rather than generic ones.

If you are being dismissed

A substantial number of families reading this will already have been to a GP and come away with nothing. What to do next.

Go back with the written chronology. If you did not bring one, that single change often shifts the appointment entirely. Specific events with dates are much harder to attribute to stress than a general report of worsening memory.

Ask directly for the referral, by discipline, and ask for the reason to be documented if it is refused. “I would like a referral to a cognitive neurologist or a memory and cognitive disorders clinic” is a reasonable request, and a refusal recorded in the notes tends to be reconsidered.

Ask for the specific tests by name — thyroid function, B12, a medication review for anticholinergic burden, an MRI rather than a CT — rather than asking whether anything should be checked.

See a different GP. This is not disloyal. Cognitive presentations in a 55-year-old are genuinely hard and some GPs are considerably more interested in them than others.

Use telehealth. Cognitive assessment by telehealth has expanded substantially and is better than an eighteen-month regional wait.

Go privately for the neuropsychological assessment if you can. It is expensive and it is frequently the thing that unlocks the rest, because a report documenting a specific pattern of impairment is much harder to set aside than a family’s account.

Call the National Dementia Helpline on 1800 100 500. They will talk through how to approach the next appointment, and they do this constantly.

And a word on the opposite risk. Pushing for a diagnosis is reasonable; insisting on a particular diagnosis is not. Australian research found that 66 of 100 specialist referrals for suspected behavioural-variant frontotemporal dementia turned out to be something else, with over-interpretation of scans and cognitive tests the commonest cause. If a specialist says it is not dementia, the right question is what it is, because a person with a three-year behavioural change still needs an explanation — and some of the alternatives are treatable.

After the diagnosis: the first fortnight

Most people are handed a diagnosis and a follow-up appointment in three months, and nothing in between. Here is what is worth doing in the first two weeks, in this order.

Get the diagnosis in writing, with the specific type named if it has been determined, the date, and a statement of current functional impact. Almost everything that follows requires this letter, and chasing it later takes weeks.

If the person is under 65 and not an NDIS participant, start the NDIS application now. Not after the next appointment. Access depends on age at application, so every week matters if they are near the cut-off.

Ring the National Dementia Helpline on 1800 100 500. Free, and staffed by people who do this all day. They will also tell you what exists in your state that you would otherwise never find.

Make the legal appointment. Enduring power of attorney and enduring guardianship have to be signed while capacity is intact, and the window is open now and will not stay open. This is the single most time-critical item on the list.

Check the insurance and superannuation before telling the employer anything. Total and permanent disablement cover, income protection, and any trauma policy. Definitions vary and the order of events can affect a claim.

Do not resign. If work is becoming impossible, that is a conversation to have after the legal and insurance advice, not before.

Deal with driving honestly and early, because an undisclosed diagnosis can void insurance cover entirely.

Book a longer GP appointment and ask for a care plan, a medication review, and referral for an occupational therapy assessment. The OT report is what the NDIS will want.

Tell two people you trust. Not everybody — two. Doing this alone for six months is the commonest and most costly mistake.