Dementia care: What families need to know

A dementia diagnosis takes an average of three and a half years from first symptom to confirmation. One in five Australians say they would have no one to talk to if they or someone they love started showing early signs. These figures came from Dementia Friendly Woollahra’s recent “What You Need to Know About Dementia Care” information session at Woollahra Library, where consultant clinical neuropsychologist Dr Jane Lonie and carer and author Dr Debra Graves OAM shared what they have learned from decades in dementia care.

If you are supporting someone living with dementia, or wondering whether changes you have noticed need a closer look, here is what the session covered.

What’s the difference between dementia and Alzheimer’s disease?

Dementia is not a single disease. It is an umbrella term for more than 100 conditions that cause a gradual decline in memory, thinking and behaviour. Alzheimer’s disease is the most common of these conditions, which is why many people use the two words interchangeably. Not every form of dementia looks like Alzheimer’s, and mixing them up can lead to confusion about symptoms, treatment and what to expect.

Three common types of dementia

Alzheimer’s disease

Alzheimer’s usually starts with trouble holding onto new information. A person might remember events from years ago clearly but forget a conversation from two hours earlier. Dr Lonie compared the process to a fishing net: information goes in, but the brain does not hold onto it.

Vascular dementia

Vascular dementia is the second most common type. Older explanations describe a sudden drop in ability caused by a major stroke, but most cases build up slowly, over decades, as small blood vessels in the brain gradually narrow. Vascular dementia and Alzheimer’s disease often occur together in the same person.

Lewy body dementia

Lewy body dementia is often missed or misdiagnosed. It is linked to Parkinson’s-type symptoms, but a key early sign, visual hallucinations, can appear before movement symptoms do, so it is sometimes mistaken for a mental health condition at first.

Dementia and delirium are not the same thing

Delirium comes on quickly and causes a person’s attention and alertness to swing: sharp one moment, drowsy and confused the next. It is usually triggered by something else, such as an infection or a reaction to medication, and it improves once that cause is treated. Dementia progresses gradually and does not reverse. People with an undiagnosed dementia or mild cognitive changes are more likely to develop delirium, so the two conditions often appear together even though they behave very differently.

Why an early diagnosis matters

According to Dr Lonie, the average time between a person first noticing a change and receiving a diagnosis is three and a half years, and closer to four years for less common, earlier-onset forms of dementia. Much of that delay comes down to people waiting to see if symptoms pass. Getting a diagnosis usually means seeing more than one specialist. A GP can arrange an initial assessment and refer on to a neurologist, geriatrician, psychiatrist or neuropsychologist depending on the symptoms.

Dementia is now the leading cause of death in Australia overall and has been the leading cause of death for Australian women since 2016, according to the Australian Institute of Health and Welfare. An earlier diagnosis gives families more time to plan medical care, and just as importantly, more time to sort out legal and financial matters while the person can still take part in that decision-making.

Dementia and the law: capacity, wills and power of attorney

This is where the session turned to a side of dementia families often overlook: legal capacity.

Legal capacity is decision-specific. Someone might have the capacity to appoint a power of attorney but not to write a valid will, depending on how complex the decision is and which legal test applies to it. The test Australian courts use to assess capacity to make a will dates back to a UK case from 1870, Banks v Goodfellow, and asks whether a person understands the nature of making a will, the extent of their property, who has a reasonable claim on their estate, and whether any disorder of the mind is affecting their decision.

Dr Lonie’s key point for families: someone with dementia can often clearly state what they want, right up until the later stages of the illness. But being able to state a preference is not the same as being able to weigh up a complex decision. That distinction causes problems in contested wills and power of attorney disputes, which is why an early diagnosis followed by proper legal advice matters so much. If you are planning a will, power of attorney or enduring guardian for yourself or a family member and there is any cognitive change involved, look for a lawyer experienced in this specific area.

Living well with dementia: lessons from a carer

Dr Debra Graves OAM cared for her husband Don for more than a decade after his diagnosis, and later co-authored the book “To Dementia With Love” about their experience. Her advice for other families:

• There is no single rulebook. What worked for Don may not work for someone else, so trust your own judgement about the person you are caring for.
• Hold onto the small things that preserve dignity: familiar clothes, routines and being spoken to as an adult.
• Build a team. Family, friends, neighbours and paid carers all played a part in Don’s care, and accepting that help made a difference.
• Look for joy where you can find it. Travel, music, family gatherings and old photos all continued to bring Don happiness well into his illness.
• The connection does not disappear. Don remained responsive to the people and things he loved until close to the end of his life.

Talking about dementia openly

More than one in five Australians say they would have no one to talk to if they or a loved one started showing early signs of dementia, and 40 per cent say they would find it difficult to raise a diagnosis with family or friends, according to Dementia Australia research shared at the session. Both speakers encouraged using the word “dementia” directly rather than avoiding it, while also respecting that some people living with dementia would rather it was not named that way for them personally. Either way, the discomfort many people feel around the word should not stop families from reaching out for support early.