getting the diagnosis

Often a diagnosis comes after symptoms have been recognized and cannot be ignored, sometimes they appear quickly – there may have been instances of repeated conversations, forgetting recent events and, blaming others for stealing things that have been mislaid and over-reacting to small mistakes.

It may in fact be hard to get a loved one to agree to go to a doctor, to get a diagnosis. In other instances, dementia is detected very early with the person diagnosed, still very capable with little to no signs of dementia. So why is it good to get a

diagnosis?

Why is it good to get a diagnosis?

Some people may feel that a diagnosis is of little use as the disease is incurable, however many of the resources we have consulted, advocate for the benefits of getting a diagnosis. 

‘At first we laughed it off when he got his actions mixed up. Then his personal hygiene began to deteriorate; he had to be reminded to wash and shave and change his clothes. Money would go from his pocket and he would blame us for its disappearance….. All these events [and many more] occurred over a 6 month period before we began to realise it was something more than just old age’[1]

1.

Symptoms that seem to point to dementia may in fact not be linked to dementia and are caused by another illness.

2. 

Dementia is not a part of normal ageing. Dementia Australia and Alzheimer’s Society Canada provide good and basic information on what the difference is between memory loss in ‘normal ageing’ and in dementia.

3.

An early diagnosis means that the person who has the condition will have the opportunity to take an active role in planning for the future and organizing access to practical and financial help.

4.

As there are many different types of dementia, a diagnosis will help to think about what the future will look like, which is again helpful for preparation both practically but also mentally and emotionally. See the help sheets by Dementia Australia on the right explaining the different types of dementia.

But how do I get my partner, my mother, my father, my friend to an appointment?

It can be really hard to get your partner or loved on to an appointment.

We have 2 grown up children who both have children and live some distance away. At Baz’s 60th birthday party they both said Dad has definitely got Alzheimer’s. The next hurdle was getting him to broach his memory problems with our GP. Baz would delight in me losing my car keys, glasses etc and say everybody did it, which is true, but it was at a different level with Baz. It took another year to get him to the GP. I managed this on the pretext

of reading an article about statins affecting the memory. Baz had been prescribed statins after his brother suffered a heart attack. The GP referred him to the memory clinic, diagnosis took a few months.  We 

Click 

here

of reading an article about statins affecting the memory. Baz had been prescribed statins after his brother suffered a heart attack. The GP referred him to the memory clinic, diagnosis took a few months.  We were finally given a diagnosis. It was a case of you’ve got alzheimers. We were given a large brown envelope with a load of factsheets in it, a prescription for donapezil hydrochloride, he was monitored for blood pressure over the next month whilst the drugs were slowly increased to maximum  and then told  he would be seen again in a year.  Baz said that they didn’t know what they were talking about and what a waste of time. He chose to ignore his diagnosis and only mentioned it again on one or two occasions believing he only had a mild dose of Alzheimers, a bit like you would class a cold really.

Sue, from TIDE – together in dementia everyday

What may happen at a diagnosis appointment?

We found this page from Dementia Australia to be helpful in explaining what may happen at an appointment with a GP and then a specialist if dementia is a concern.

Reactions to a diagnosis

As of many human experiences we all react differently, there may be shock and a feeling of numbness, relief, panic, anger, feeling of loss. They're all ok! We would just encourage you to sit with these feelings - don't try to push down and suppress, though we know that there are limited hours in the day to 'just sit'.

 

We would love for you to send us a story or reflection when you and your loved one received the diagnosis of dementia. If you feel lead to, please email us via our Contact Form and share your story.

Will a diagnosis change life straight away?

It is a diagnosis for the future and each person will have experienced the lead up to a dementia diagnosis differently. Some families may have already changed and a diagnosis is a confirmation and explanation for why this is. Others may receive the diagnosis and still have time to live life as it still is. We would also love or you to share your reflections on this experience. Please email us via our Contact Form if you feel you would like to contribute.

[1] Brotchie, J. (2003) Caring for someone with dementia. Age Concern England, London

Informing family and friends

Starting the conversation

‘Perhaps the most valuable thing we could suggest is to start the conversation - together - as a family – now. This conversation needs to become a natural part of our living, sharing and caring together – as family and friends’.

Dementia Australia urges us to start the conversation

Dementia is not something that happens to an individual – it is a whole family, a whole neighbourhood who starts ‘living with dementia’. Being able to talk about it, letting people know, is a big support – but how to do that in a positive way?

With your partner

 

Some things that may be helpful to talk and think about, if the dementia has not progressed significantly:

 

What do we want our lives to look like? | Researching others’ experiences and thoughts | talking to family |

thinking about guardianship, wills, end of life plans, thoughts about going into full time care at a later stage

However, often dementia may have progressed and you might not be able to have these sorts of conversations with your partner. You can then be in the difficult position of having to make decisions for them and instead of with them.

See here for stories and information on legal, medical and financial situations and planning you may have to do

with your parent

 

Again, the moment may have passed to have a conversation with your relative – often your mother and father. We have collated some stories about the experiences of adult children caring for their elderly parents.

When do we start the conversation with the wider family?

 

Often it happens as symptoms cannot be ignored and family get worried. This happened in Sue’s story.

Holding a family a meeting – some things to think about

 

We found this website gives some good ideas about holding a family meeting.

Caring from a distance?

 

It can be hard to know how to include the family in caring if they live far away. Below is a help sheet from Dementia Australia that addresses this:

https://carers.dementia.org.au/files/helpsheets/Helpsheet-TipsToAssistSocialEngagement06_TipsForCaringFromADistance_english.pdf

feeling a little overwhelmed?

 

We found this to be quite a beautiful set of, what the Family Caregiver Alliance calls ‘Real-Life strategies’ for dementia caregiving. It takes the pressure off the carer, which is a thing we need to keep reminding ourselves to do, and is a little humorous I think.

https://www.caregiver.org/ten-real-life-strategies-dementia-caregiving

LEGAL, FINANCIAL AND MEDICAL

Many things to think about – and

sooner rather than later!

** Please note that legislation will differ from state to state. We are slowly colalting information for each state

thinking about capacity

It is often easy to fall into the trap of thinking that once a person is diagnosed with dementia that they no longer have the capacity to make decisions for themselves. However, especially for those who are diagnosed early, we know that those we may become full time carers for in the future still have complete 'capacity' to make decsions fo themselves. 

Some things that may be helpful to keep in mind when thinking about capacity
  • Assume capacity

    • work on the basis that they someone does have capacity no matter what state of dementia they are in 

    • work on the premise as they have capacity rather than assuming they don’t

  • if a person's capacity fluctuates, take their decisions and thoughts on what you'd consider their ’good’ days

Making decisions for another person

Making decisions for and on behalf of another person can be tricky – even when we feel we know that person really well. Dementia Australia shares one story from a carer that explains:

it's not about ‘taking over a person's choices – but really soul-searching to work out what they would have wanted’

Click here for the story.

But as dementia advances, people do need assistance. It is better to think about this as early as possible – who will make decisions, with whom? Who will work in my best interests? A carer is sometimes called a substitute decision maker.

Aus Government planning ahead tools

Click 

here

Click 

here

dementia australia planning ahead tools

Power of attorney

A power of attorney (POA) s a legal document in which a person nominates and gives legal authority to another person to act on his or her behalf in financial matters only. It can cover all manner of things, so it is important to know that the person appointed is trustworthy has your

interests at hear, and can negotiate respectfully with the person they are acting on behalf of as well as with family and friends. A POA document allows you to delegate the management of your affairs if anything happens and you cannot act on your own behalf. This will

become essential for anyone diagnosed with dementia, but accidents can happen to all of us – a POA is a good document to have in place.

Guardianship

Information to come

Elder Abuse

Information to come

Making a will

Information to come

Advanced care plan

From Life Matters

An ABC Radio National program, explores advanced care plans with a GP and a woman who had to make a plan with her husband.

Advance Care Planning Australia

A helpful website for thinking about Advance care planning

From Hammond Care

A brief set of principles that may help you think about end of life decisions and wants.

End of life choices

Dementia Australia

A helpsheet from Dementia Australia

From NSW Health

This is a long and detailed set of guidelines produced by the NSW Government, however it could be helpful for you to think through end of life decisions.

 
 
 
 
 
 
 
 
 
 
 
 

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