BY WEALTH ADVISER
Introduction: why close‑up dementia changes the conversation
Dementia feels very different up close than it does in abstract statistics or policy papers. For Ashley Owen, the shift from theory to reality came when his mother, who had been sharp enough to complete a PhD at 90 and was still certified mentally competent at 94, slid rapidly into vascular dementia, entering her first permanent dementia facility at 95 and dying at 97 after a final stroke.
His account of those years – moving through four different facilities, negotiating emergency hospital transfers, signing restraint consents and watching his mother lose not only memory and independence but also any meaningful control – gives Australian families a rare, candid view into what dementia care can look like day to day. It also underlines a core message: the earlier families think about care options, legal decisions and funding, the more scope they have to protect dignity and peace of mind for everyone involved.
Inside the reality of dementia care
Owen describes his mother’s decline as both fast and, in hindsight, foreshadowed. What the family initially dismissed as “forgetfulness” – misplacing items, minor confusion – evolved into missed meals and significant weight loss, getting lost near home, writing blank cheques and forgetting how to use the lift she had taken every day for 20 years. Eventually, despite extensive use of in‑home services, it became clear she could not safely live alone, especially after repeated falls and fractures at night that required hospital treatment.
Moving into permanent care did not resolve her struggle for control. A fiercely independent personality who hated the idea of not being able to “just walk out the door and go home,” she spent much of her first year in facilities plotting and attempting escape – sometimes successfully, slipping out through fire exits and loading docks until found wandering lost in nearby streets. Many families recognise this pattern: even when dementia has clearly impaired judgment, the person’s sense of self as an autonomous adult remains strong, making transitions into care both necessary and traumatic.
Life inside dementia facilities is confronting. In the final home, which specialised in advanced dementia with aggression, Owen describes a colourful environment full of large pictures of birds and flowers, daily activities like music, painting, balloon games and even petting zoos – “a cross between a madhouse and a kindergarten.” Yet beneath the surface, there was constant noise: residents shouting in multiple languages, using walkers as battering rams, or repeatedly knocking furniture against walls. Carers and families lived with an almost continuous background of distress and agitation, punctuated by brief calm periods that could end abruptly without obvious trigger.
Perhaps most striking is how dementia reshaped his mother’s communication. In the last 12–18 months she could no longer hold sustained conversations, instead al‑ ternating between long blank stares and apparently random sentences that, on closer listening, often hinted at unmet needs: “There wasn’t any bacon at the beach today” proba‑ bly meant hunger; “I was stuck in a tunnel underground for months” seemed to express feeling trapped and lost. Health information for carers increasingly encourages this kind of interpretive listening, inviting families to look past literal words and ask what emotion or need the person might be trying to express with the linguistic tools they still have.
Owen’s story also illustrates how dementia erodes the concept of personal possessions. Early attempts to personalise his mother’s room with photos and familiar items failed as she stopped recognising them – and as residents routinely wandered into each other’s rooms, took handbags, walkers and clothing at random, and sometimes used items as projectiles. Despite meticulous labelling, clothes cycled between wardrobes, and arguments broke out over items that in truth belonged to neither person. For families, this can be shocking; understanding that the priority has shifted from preserving “things” to preserving comfort and safety helps reframe expectations.
Finding the right care – and the right people
A major lesson in Owen’s account is that not all aged care homes are the same, and that “dementia care” is not a single category. His mother’s quiet yet stubborn temperament, combined with loss of verbal skills, translated into physical aggression: slapping, punching, scratching and throwing objects, which the first three facilities could not manage, leading to formal or informal evictions and repeated hospital stays. Only the fourth facility, designed for residents with advanced dementia and behavioural issues, provided an environment where staff, systems and layout were aligned to her needs.
For families, this suggests approaching facility selection more like matching a complex medical condition to the right specialist ward than choosing a generic “nursing home.” Helpful practical tests include walking the corridors at unannounced times to see whether residents are mostly engaged in activities or isolated in rooms, and watching how staff interact when they do not appear to be under direct scrutiny. Owen describes standing for long periods observing staff through a window and never seeing behaviour that changed when they knew he was watching – a powerful indicator of consistent culture rather than staged performance.
He also highlights the importance of staff continuity and personal connection. In the final facility, even kitchen and office staff seemed to know residents and family members by name, pitched in at mealtimes to calm and feed residents, and were visibly moved when his mother died, with several crossing roles to offer condolences and hugs. National dementia policy emphasises workforce capability and compassionate care as key pillars of quality, recognising that staff who understand individual triggers and histories can prevent or de‑escalate many crises without reaching immediately for medication or restraints.
Nevertheless, difficult discussions about “restrictive practices” are often unavoidable. Owen recounts being asked to sign a Restraint Consent form authorising, under defined conditions, the use of chemical restraints (medications), mechanical restraints (belts or harnesses), physical holding, environmental restrictions (locked doors, limited access areas) and isolation in secure rooms. Australian guidance is clear that such measures must be a last resort, proportionate to the risk and regularly reviewed, and ideally considered in the context of an Advance Care Directive and the person’s previously expressed values about autonomy, safety and comfort. Families who have had early conversations about these issues often find it easier to weigh up short‑term distress versus longer‑term harm, rather than making rushed decisions when everyone is exhausted and frightened.
Documents that speak when you no longer can
If there is a single practical thread running through Owen’s story, it is that critical documents need to be in place before dementia limits capacity. His mother’s insistence that she would “live to 120” and could make decisions “when the time comes” meant she resisted conversations about wills, Enduring Powers of Attorney (EPOA), Enduring Guardianship and Advance Care Directives. By the time dementia advanced and her lawyer was no longer comfortable certifying capacity, the family was left with outdated or incomplete paperwork and no clear, consolidated statement of her wishes.
Australian resources such as Dementia Australia’s “Planning ahead” and Better Health Channel’s “Dementia – early planning” stress the value of acting while the person can still understand and sign documents. The key instruments typically include:
• A current will, clearly appointing an executor and reflecting contemporary intentions.
• An Enduring Power of Attorney, authorising trusted individuals to manage financial and legal affairs if capacity is lost.
• An appointment of an Enduring Guardian (or equivalent role, depending on state), empowering someone to make decisions about where the person lives, what services they use and certain medical or personal matters.
• An Advance Care Directive, recording preferences about future medical treatment, hospital transfers, life‑pro‑ longing interventions and palliative care, and sometimes appointing a medical decision‑maker.
Dementia Australia emphasises that these documents are not merely legal formalities but tools that allow people to “speak” when they can no longer explain what they want. For families, they provide a reference point when disagreements arise or when clinicians propose treatments that may extend life but at the cost of comfort or dignity.
Owen’s later reflections show how this experience reshaped his own planning. He updated his Enduring Guardianship, EPOA, Advance Care Directive, will and superannuation instructions, including a binding death nomination and a pre‑signed instruction to his SMSF trustees to shift money out of super to reduce the 17% death tax on taxable super paid to non‑dependent adult children. He even prepared the information needed for his own death certificate in advance, having discovered how errors made under pressure can delay probate by weeks. For clients of financial advisers, his approach illustrates how estate planning, SMSF governance and aged care planning should be integrated rather than treated as separate checklists.
Paying for care without losing the bigger picture
Dementia care is not only emotionally demanding; it can be financially intensive over many years. Owen estimates that his mother’s permanent aged/ dementia care cost around $120,000–$150,000 per year out‑of‑pocket after insurance, roughly half of what 24/7 professional in‑home care would have cost. He notes that, while substantial, these costs were lower than he had anticipated once the mix of accommodation payments, care fees and insurance reimbursements was fully understood, highlighting the importance of detailed, personalised projections rather than relying on rough assumptions.
Under Australia’s residential aged care system, costs typically comprise a basic daily fee, a means‑tested care fee and accommodation payments, which can be paid as a lump‑sum Refundable Accommodation Deposit (RAD), a Daily Accommodation Payment (DAP) or a combination of both. Government examples show how these elements interact with income and assets tests, and how choosing between RAD and DAP affects cashflow, pension entitlements and estate outcomes. Industry analysis indicates that room prices (RADs) have been trending higher, and that policy changes – for example around provider retention of a portion of the RAD or adjustments to interest rates used to calculate DAPs – can change the financial calculus for families.
For many Australians, the family home is central to this decision. Selling the home to fund a RAD may simplify the fee structure and reduce DAP, but it can also affect age pension treatment and intergenerational expectations. Retaining the home and paying DAP from income and investments preserves capital but demands reliable cash flow and may require portfolio changes. Advisers play a key role in modelling these scenarios, including stress‑testing them against longevity, investment risk and the potential need to transition between home care and residential care as dementia progresses.
Owen’s comparison between residential care and full‑time home care also draws attention to hidden costs borne by families: unpaid caregiving, reduced working hours and the emotional strain that can ripple through marriages and future retirement plans. Thoughtful planning considers not only the person with dementia but also the wellbeing and financial resilience of carers, aiming to avoid situations where one generation’s crisis care consumes the retirement security of the next.
For Australian retail clients working with financial advisers, the message is not to assume the worst, but to prepare for the plausible: cognitive decline that may be rapid, care needs that may be complex, and family emotions that will be intense.
Using planning to protect dignity and peace of mind
In his closing reflections, Owen contrasts three different deaths he has witnessed up close: his mother’s physically pain‑free but mentally devastated final years with advanced dementia; his father’s mentally sharp but physically agonising death from cancer; and his brother’s sudden death in a plane crash. Rather than ranking them, he concludes that none is ideal and that he may not get to choose his own path, but that this uncertainty should sharpen his focus on how to use his remaining time and how to reduce avoidable burdens for those he leaves behind.
Planning ahead for dementia and aged care – emotionally, legally and financially – is part of that work. It enables conversations about values and preferences while the person can still participate; it gives families a framework to make tough calls about hospital transfers, treatments and care settings; and it gives advisers a clear mandate to align wealth strategies with real‑world care goals instead of abstract targets.
For Australian retail clients working with financial advisers, the message is not to assume the worst, but to prepare for the plausible: cognitive decline that may be rapid, care needs that may be complex, and family emotions that will be intense. By using tools such as wills, Enduring Powers of Attorney, Enduring Guardianship, Advance Care Directives and aged care funding strategies in an integrated way, families can ensure that when minds change, money and decisions are still guided by the person they once were – and by the love their family carries for them now.
Selected references
• Ashley Owen, “10 things I learned about dementia and care homes from close range,” Firstlinks, 7 January 2026.
• Ashley Owen, “Six things I learned about age/dementia care costs, and how they have shaped my own plans,” OwenAnalytics, 19 October 2025.
• Dementia Australia, “Planning ahead,” 4 May 2025.
• Better Health Channel (Victoria), “Dementia – early planning,” 10 March 2018.
• Australian Government Department of Health and Aged Care, “Residential aged care fee scenarios,” 17 December 2025.
• ELDAC, “Advance Care Planning – Dementia,” 13 December 2025.
• “Between hope and future planning: the dementia journey for care partners,” 20 March 2025.
