Memory changes and where to live

Forgetting a name now and then is part of life. Changes that keep happening, or that start to affect everyday things like paying bills, cooking or finding the way home, are worth checking.

The first step is usually a GP. There’s no single test for dementia. The doctor takes a history, asks about day-to-day changes, and may order blood tests or scans. Other conditions can look like dementia, including depression, infections, medicine side effects, sleep problems and vitamin deficiencies, and some of these can be treated.

The GP may refer the person to a specialist, such as a geriatrician, neurologist or psychiatrist. A diagnosis can take time, and sometimes the answer is “possible” or “probable” at first, with more tests later. If something doesn’t feel right, it’s fine to ask again or see another doctor.

It can help to bring someone along, and a written list of the changes noticed. Dementia Australia’s National Dementia Helpline, 1800 100 500, can talk through worries before, during or after a diagnosis. It’s free, confidential and open 24 hours a day, every day of the year.

A diagnosis changes things, but it doesn’t mean losing everything at once. Many people living with dementia keep working, driving for a time, volunteering, making decisions and enjoying life, especially in the early stages.

Language matters. Dementia Australia encourages phrases like “a person living with dementia” rather than words like “sufferer”. The person is still themselves, and still entitled to be part of every decision about their life.

Dementia Australia offers free post-diagnosis support, counselling and peer support for the person and their family. For someone under 65, the National Disability Insurance Scheme (NDIS) may be an option, but the application has to be made before turning 65. From 65, support comes through My Aged Care on 1800 200 422.

Driving is one practical question to raise early. In both Queensland and NSW, drivers must tell the state licensing authority about a medical condition that could affect safe driving: the Department of Transport and Main Roads in Queensland, and Transport for NSW in NSW. A doctor can help work out what’s safe.

Legal planning documents can only be made while a person has capacity, which means understanding what the document does and signing it freely. Dementia gradually affects that, so earlier is easier. Planning early means the person’s own wishes guide later decisions, including where they live.

Queensland: an enduring power of attorney can appoint someone to make personal (including health) decisions, financial decisions, or both. An advance health directive records directions and wishes about future health care and can appoint someone to make health decisions. Without these, a statutory health attorney (usually a partner, carer or close relative) may make health decisions, and QCAT may need to appoint a guardian or administrator.

NSW: an enduring power of attorney covers financial and legal decisions only. A separate appointment of enduring guardian covers decisions about where you live, the services you receive and health care. An advance care directive records your wishes about future care; NSW doesn’t require a particular form, and NSW Health publishes one. Without these, NCAT may need to make a guardianship or financial management order.

A will is worth reviewing at the same time. A solicitor can prepare the documents and form a view on capacity. In NSW, NSW Trustee and Guardian also prepares them, for a fee that’s waived for some pensioners, including people eligible for a full Age Pension. Advance Care Planning Australia has free information and a helpline on 1300 208 582.

For many people living with dementia, familiar surroundings, routines and neighbours make a real difference. Staying at home is a full answer, often for a long time, especially with help that grows as needs change.

Help starts with an assessment through My Aged Care. Support at Home can include personal care, nursing, cleaning, meals, transport, social support and respite for a family carer. Personal care and clinical care cost nothing under Support at Home. Other services usually carry a contribution based on income and assets. Lighter help comes through the Commonwealth Home Support Programme.

Changes to the home can help too: better lighting, clear signs on doors, simpler layouts and safety devices. Dementia Australia’s free At Home with Dementia service helps make a home more dementia-friendly, and equipment and home changes can be funded through Support at Home’s Assistive Technology and Home Modifications scheme.

If changes in behaviour become hard to manage, Dementia Support Australia offers free advice 24 hours a day on 1800 699 799, through its Dementia Behaviour Management Advisory Service.

A retirement village or land-lease community can offer things that help: neighbours close by, a smaller, single-level home, less upkeep, and in many villages an emergency call system. Help at home comes in the same way as anywhere else, through Support at Home or private services.

What they don’t provide is care. They are housing, under state housing laws, not aged care. A move also means learning a new place, and many people find that harder once memory changes are well along. Some families find that an earlier move, while the person can settle in and take part in the choice, works better. Others decide staying put is right. Both are fair.

Queensland: under the Retirement Villages Act 1999, an operator can give two months’ notice to end a resident’s right to live there if the operator and an aged care assessor reasonably believe the accommodation is no longer suitable, for example because the resident needs personal care the operator doesn’t normally provide. Residents can dispute it, and free legal help is available from the Queensland Retirement Village and Park Advice Service.

NSW: under the Retirement Villages Act 1999, an operator can apply to NCAT to end a contract if it believes the resident’s home is no longer suitable for them because of a physical or mental incapacity. Only the tribunal can make that order, and before it does, it must consider a medical report from a doctor the resident nominates, or give the resident a fair chance to provide one. Seniors Rights Service gives free legal help.

Some villages have an aged care home on the same site. That aged care runs under a separate law, the Aged Care Act 2024, with its own assessment, agreement and fees, and there’s no guaranteed place. The village contract’s exit terms still apply when you leave the village, including any exit fee, which is usually paid from what comes back to you. It isn’t a short or easy move. In a land-lease community, you own the home and rent the site, and moving out usually means selling the home, which can take time.

Some aged care homes have a memory support unit, sometimes called a secure or dementia-specific unit. These are usually smaller areas designed to be calmer and easier to find your way around, often with a garden and staff experienced in dementia care. What each home offers varies a lot.

Moving into any aged care home, including a memory support unit, needs an aged care assessment and is covered by the Aged Care Act 2024. Fees follow the same rules as any aged care home: a basic daily fee, means-tested contributions and accommodation costs. Room prices vary between homes, and each home must publish them.

A locked unit limits where someone can go. Under aged care law, that kind of restriction is a restrictive practice. It should be used only as a last resort, in the least restrictive way, with informed consent from the person or, if they can’t give it, a substitute decision-maker recognised under state law, and with a behaviour support plan in place. Ask how the home approaches this.

For people with very severe changes in behaviour, the Specialist Dementia Care Program offers specialist units for a time, with the aim of moving to a less intensive setting later. Dementia Support Australia can explain how referral works.

• How do you help new residents living with dementia settle in?
• What dementia training do staff have, and how many are on at night?
• Can residents go outside freely, and is there a secure garden?
• How do you respond when someone is distressed, without using restraint?
• Can a couple stay close if only one of them needs the memory support unit?

Caring for someone living with dementia can be rewarding, and it can also be exhausting. Partners and adult children often carry a lot for a long time before asking for help.

Carer Gateway on 1800 422 737 offers free counselling, coaching, peer support and help arranging respite. Dementia Australia offers counselling and carer programs, and the Helpline on 1800 100 500 is there any time. Respite can mean a few hours at home, a day program, or a short stay in an aged care home, which is funded for up to 63 days a financial year with approval through My Aged Care.

Carers may also be eligible for Carer Payment or Carer Allowance through Services Australia. Asking for help early isn’t giving up. It’s often what lets people keep caring for longer.