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Family & carers

“I am a family member or carer”

You will spend more time with this than any professional involved, and you know things about the person that nobody else in the building knows. This page is about turning that into better care — what to ask, when to follow up, and when to be concerned.

Practical tools for families

What to ask, and when

The single most useful thing a family can do is ask a specific question at the right moment. These are the moments.

  • At diagnosis. Which type of dementia do you think this is, and what makes you think that? Has anything reversible been excluded — thyroid, B12, medications, depression, hearing? What should we expect over the next year? What should we do now while they still have capacity?

  • When any new medicine is started. What is this for, specifically? What was tried before it? What are the risks in someone with dementia? When will it be reviewed, and by whom? What would make you stop it? If it is a psychotropic: is this being recorded as a restrictive practice, and are you asking my consent?

  • At the annual or six-monthly review. Can we go through every medicine on the chart and ask what would happen if we stopped it? Is anything on here only still being taken because nobody has revisited it? Are the preventive medicines still worth taking given the prognosis?

  • When they suddenly get worse. Have you excluded delirium? Have you checked for infection, constipation, urinary retention, pain and dehydration? Has any medicine changed recently? 64

  • When behaviour becomes the problem. What do you think they are trying to communicate? Has pain been formally assessed with a tool? What non-medication approaches have been tried, and for how long? What is the plan if this does not work?

  • When they are clearly declining. Are we at the point where comfort matters more than prolonging life? What would you recommend we not do? Can we write an advance care plan and get anticipatory medicines charted so they can stay here rather than being sent to hospital?

Getting the most out of a GP visit

Visiting doctors in residential aged care work under time pressure. Five minutes of preparation changes what they can do.

  1. Write down the three things that matter most. You will forget the third one otherwise. Hand the list over at the start, not at the end.

  2. Bring specifics, not impressions. “Agitated in the evenings” is hard to act on. “Calls out for her mother between 4 and 6pm, most days, worse if the television is on” is a plan.

  3. Say when it started and what changed around then. New medicine, new roommate, a hospital admission, a change of staff, a chest infection. Timing is the most useful diagnostic information you hold.

  4. Ask about pain explicitly. People with dementia are systematically under-treated for pain because they cannot report it 4974. If your relative has arthritis, a healed fracture or pressure areas, say so.

  5. Ask what the medicines are for. Bring the current list. Ask which could come off. This one question does more good than almost anything else in aged care.

  6. Ask for the plan in writing. So the night staff, the agency nurse and the after-hours locum all see the same thing.

The one-page life story

The most valuable document you can give a facility, and it takes twenty minutes. It changes how a stranger interprets your relative at three in the morning.

  • Who they were. Work, where they grew up, family, war service, what they were proud of.

  • What to call them. The name they actually answer to. Not necessarily what is on the file.

  • Daily rhythms. Early riser or not. How they take tea. Whether they shower morning or evening, and whether they ever liked showers.

  • What soothes them. Music and era, a particular blanket, being outside, hand cream, a football team, a language they revert to.

  • What frightens or upsets them. Being rushed, being cold, water on the face, men in uniform, the dark, being touched without warning.

  • Things not to say. Bereavements they may not remember. Anything that will be relived as new grief each time.

And you

Carer exhaustion is not a side issue. It is the thing most likely to change what happens next, and it is a health problem in its own right. Carer Gateway (1800 422 737) provides free counselling, coaching and respite. Your own GP can write you a management plan.

Grief in dementia does not wait for death — it arrives in instalments over years, and it is often unrecognised because the person is still alive. Relief when a phase ends is normal too, and it is not a betrayal.

Your reading pathway

The same library everyone else reads, sequenced for what you actually need from it and why.

  1. 1 Understanding dementia 8 min read Start here. Which disease is actually causing it changes what to expect and which medicines are dangerous.
  2. 2 Changed behaviours 11 min read The part families find hardest. Why behaviour changes, and why the first response should almost never be a sedative.
  3. 3 Medicines in dementia 13 min read Read before agreeing to any psychotropic. It explains what you are entitled to be told, and what the risks actually are.
  4. 4 Living well, and supporting families 10 min read Communication, legal paperwork, driving, and the free services — including support for you, not just them.
  5. 5 Supplements and dementia 15 min read For when someone recommends a supplement, or you are wondering whether you should be doing more.
  6. 6 Advanced dementia and end-of-life care 11 min read Difficult, and better read before you need it than during a crisis at 2am.

Browse every topic instead →

Sources cited on this page

  1. 49 Husebo BS, et al. Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial. BMJ. 2011;343:d4065.
  2. 64 Australian Commission on Safety and Quality in Health Care. Delirium Clinical Care Standard. View source
  3. 74 Manietta C, et al. Algorithm-based pain management for people with dementia in nursing homes. Cochrane Database Syst Rev. 2022.

See every source cited across the dementia section →

Reading on behalf of someone else?

Living with dementia Nurses & care workers GPs & clinicians Facility leadership

General information only, reflecting the interpretation of Umbrella Aged Care’s GPs of the published evidence as at September 2026. It is not individual medical advice, does not create a doctor–patient relationship, and must not be used to start, stop or change any treatment. Evidence and Australian regulatory and PBS arrangements change — always confirm current advice with the treating GP, pharmacist or specialist.

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