My loved one has just been diagnosed with dementia. What should I do?
It can be a challenging time when a loved one is diagnosed with dementia and it can be difficult to know what to do.
Here are some strategies that may be helpful:
- Acknowledge that it can be an emotional time for not just your loved one, but also for you. You may feel guilt or distress about your loved one no longer being able to take care of themselves and possibly having to hand over the care responsibilities of your loved one. Take extra care of yourself while you gain the strength to process this change.
- You may find you want to grieve the person they once were. This is OK and may help you to care for and spend time with your loved one as their dementia progresses.
- Seek help. Call a friend, someone you know who has been in a similar position or, alternatively, the National Dementia Helpline on 1800 100 500. Helpline staff may be able to help you figure out your next steps, or connect you with someone who can.
- Learn more about dementia. See the below section named ‘What is dementia?’ or browse Dementia Australia’s range of help sheets that you might find useful.
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- Take each day (or each hour or minute) as it comes.
- Do your best to treat your loved one in the same way before they were diagnosed with dementia, and make the same effort as before.
- If you can, work with them to figure out a plan about how they can receive the care they need. This could look like having help around the house from family, arranging a home care service, or moving into a new place where your loved one will be able to receive support around the clock.
- If you haven’t already, try to find out as much as you can about your loved one’s life story. Questions and prompts can be found online if you’re stuck on what to ask. Use their story to connect with them and reminisce with them.
- Some people living with dementia find that with the disease comes a loss of independence. Give your loved one something to do, for example painting, gardening or even just folding some laundry. Knowing more about their life story and understanding the tasks they enjoy and have done a lot over the years can help.
- If you feel frustrated with your loved one, remember that it’s the dementia that you’re frustrated with, not the person. Treating the disease as separate from your loved one can sometimes help.
What is dementia?
It can help to understand what dementia is. Dementia involves the gradual loss of brain cells, as the neurons inside the brain are dying and compromising the person’s ability to function the way they used to.
- In 2022 it was found there is an estimated 487,500 Australians currently living with dementia.
- An estimated 250 people are diagnosed with dementia every day.
- Nearly 1 in 10 people over 65 have dementia increasing to 3 in 10 over the age of 85.
- At Eldercare, over 70% of our 1600 residents are living with a diagnosis of dementia.
Source: Dementia Australia 2022.
What is the difference between dementia and Alzheimer's?
It is common for people to believe that dementia and Alzheimer’s are the same thing. However, dementia is an umbrella term used to describe loss of memory, intellect, rationality, social skills and/or physical functioning. Almost 150 types of dementia have been identified and the most common type of dementia is Alzheimer’s.
- Alzheimer’s is associated with loss of memory, thinking and behaviour. Up to 70% of dementia is diagnosed as Alzheimer’s. It involves a slow decline, usually over eight to 10 years.
- Vascular dementia is associated with disorders of blood flow to the brain and may include transient ischemic attacks (TIAs), also known as mini strokes.
- Dementia with lewy bodies involves the degeneration and death of nerve cells. Abnormal spherical structures called lewy bodies develop inside nerve cells and can lead to sleep difficulties, increased distress, visual hallucinations, tremors and stiffness similar to Parkinson's disease and a fluctuation in mental state where a person can be lucid at one time, then confused and disorientated at another.
- Frontal temporal lobe dementia affects mood and social behaviour rather than memory initially. In the early stages, speech can also be affected.
- Alcohol-related dementia is caused by long-term alcoholism. This type of dementia can be partially reversed for 30% of people who stop drinking and have a good thiamin intake (found in wholegrains, meat and fish).
- Younger onset dementia involves a person being diagnosed with dementia under the age of 65. In 2022 it was found that over 28,800 Australians are living with younger onset dementia Dementia Australia 2022).
What happens to the brain in someone with dementia?
Gradual changes occur in the brain over a long time. Neurons die, connections between brain cells are lost and the brain shrinks. It is amazing how well people cope with and compensate for this. Changes caused by dementia can include:
- Memory changes
- The ability to carry out tasks and processes (telling the time or getting dressed may become more difficult)
- Making decisions
- Sensory input (smell, touch, sight, hearing, taste) changes
- Function (balance, walking, swallowing)
- May lose words but retain the rhythm of speech (which is why music can help)
- Difficulty in recognising people
There is no cure for dementia.
- The Understanding Dementia Massive Open Online Course (MOOC) from the University of Tasmania is a free online course for everyone with a certificate given to students upon completion.
- Dementia Training Australia has free courses.
- Dementia Australia has produced The Dementia Guide, a range of help sheets, videos, resources translated in 38 different languages, resources specific to types of dementia, resources for those from Aboriginal and Torres Strait Islander communities, culturally and linguistically diverse (CALD) backgrounds and the LGBTIQ community.