Practical steps at the start of dementia
The symptoms and diagnosis may be scary and overwhelming, but among the myriad questions is a raft of legal issues to consider.
Every hour, 10 Australians are diagnosed with dementia, a degenerative, terminal disease that strips people of their memory and independence. An estimated 472,000 people in Australia are living with dementia. Without significant medical breakthrough, this number could rise to 1.1 million by 2058, with an enormous and rapidly growing cost to the economy.
There are several types of dementia, including Alzheimer’s disease, vascular and Lewy bodies. But for most people, the gradual deterioration in brain functioning has similar impacts on their thinking skills, which may affect speech, reasoning, visuospatial abilities, emotional responses, social skills and physical functioning.
Memory, reasoning, planning and everyday living becomes increasingly difficult.
It might start with the constant search for glasses or keys and perhaps forgetting the name of a recently visited restaurant, but the distinguishing factor between forgetfulness and Alzheimer’s disease is the ability to retrace your steps to find a lost object or recall the evening some time later.
For Christopher, the first signs that Jennifer, his partner of 41 years, had the most common form of dementia was when she would repeatedly ask the same question soon after Christopher had answered.
Pretty soon, things started to disappear and couldn’t be found. While Christopher knew something unusual was happening to this highly intelligent and organised woman, the crunch came when Jennifer suggested to Christopher that they should get married. His nightmare day was when she left the apartment and it took eight hours for the police and others to find her. She doesn’t remember it.
Visits to her GP, a neurologist and geriatrician confirmed, through the myriad tests, that Jennifer had Alzheimer’s disease.
After processing the diagnosis, Christopher and Jennifer set about getting on with the things they both loved – walking, art galleries, picnics by the river and coffee with friends.
In the background, Christopher was focusing on the longer term – including where to find help when they needed it, what they could afford and the best place for them to live, particularly if something happened to him.
A call to My Aged Care allowed them to get some home support in place, which they will continue to build on as the disease progresses. In the meantime, the focus is on a good diet, exercise and doing the things they love together.
Resist the urge to take over
According to Dementia Australia, more than half a million Australians are living with dementia or younger onset dementia. Without a medical breakthrough, that number is expected to double in the next six years.
Canberra geriatrician Mary Ann Kulh likes to remind her clients that dementia usually takes a longer course compared to other terminal conditions.
Individuals can remain independent for the early stages of the condition and continue to enjoy hobbies, recreation and the company of friends and family, she says.
Kulh says too often families are over-protective or condescending and take over without considering that their loved one is still capable.
This could mean allowing a person to speak for themselves about their concerns during medical appointments instead of speaking for them or prematurely taking over their financial affairs without their full permission.
There is more than one type of dementia. Alzheimer’s disease is the most common cause, where memory loss is foremost.
Other causes of dementia can be very different. In behavioural variant frontotemporal dementia, memory is usually preserved early, whereas loss of ability to do complex tasks or loss of judgment may be the first symptoms. In Lewy body dementia, there may be visual hallucinations. Dementia Australia is a good resource for information of the different types and much more.
Even getting someone to a doctor to confirm their symptoms equate to dementia can be challenging. There can be denial or lack of insight that something is wrong. Others may be afraid of having their fears confirmed.
The symptoms and diagnosis of any dementia may be scary and overwhelming, but among the myriad questions is a raft of legal issues to consider.
It’s much easier and clearer for everyone concerned if these are addressed soon after any diagnosis, rather than later.
Practical steps
First, is the will up to date? Also, has an advance care plan been prepared to outline preferred future healthcare and medical treatment?
It is also important to appoint a person who can act on someone’s behalf when they lose capacity to make informed decisions. These decisions can be divided into personal matters (where they live), health matters (medical treatments, medications) and financial or property matters (access to bank accounts and asset sales).
With elder financial abuse a serious issue, the best person (or people) to appoint as your enduring power of attorney is someone you trust the most, says Townsends Business & Corporate Lawyers partner Peter Townsend.
There is literally no greater power you can give to someone than to be able to deal with your assets, he says, so it is crucial that you trust the person implicitly.
It may be your spouse, adult children or a professional such as a solicitor or accountant, or a mixture of all of them.
Townsend says the attorney might be able to exercise power immediately – that is, they don’t have to wait until the grantor loses capacity.
However, if the grantor wants the attorney to exercise their power only when the grantor loses capacity, then the question is: who makes that decision?
The law about when a person loses mental and therefore legal capacity has been the subject of considerable comment.
The assessment could be left up to the attorney or it could be left to, say, two medical practitioners with the appropriate qualifications.
Townsend says the person who asserts that the grantor is no longer legally capable is the person who bears the onus of proving that. So, even if you leave it to the attorney, they may want their decision supported by expert medical opinion.
It’s worth remembering that there are many conditions with symptoms similar to dementia, so don’t assume that someone has dementia just because some symptoms are present.
Strokes, depression, alcoholism, infections, hormone disorders, nutritional deficiencies and brain tumours can all cause dementia-like symptoms. Many of these conditions can be treated.
With no known treatment for dementia, having good support from the outset is paramount.
This article was first published by Third Age Matters director Bina Brown.
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