What is dementia?

Dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease.

Dementia affects thinking, behaviour and the ability to perform everyday tasks. Brain function is affected enough to interfere with the person’s normal social or working life.

Support

A Better Visit – iPad app for families: two player games designed to facilitate communication and positive interactions between people with dementia and their visitors.

COVID-19 Update: tips for people living with dementia and resources relating to COVID-19 for patients, families and carers.

For Family Carers and Family Members: education videos and resources for carers and families.

For People Living With Dementia: education videos and resources for people living with dementia.

National Dementia Helpline: helpline for information and advice.

Planning Ahead – Start2Talk: tools to assist families, carers and people living with dementia plan for the future.

Support for People Recently Diagnosed: information on how to access supports including post-diagnostic support.

Dementia Support Australia: support for family carers

The Dementia Guide: a guide for any person impacted by any form of dementia at any about includes information on treatments, support and services available.

Moving Pictures – Dementia Awareness for CALD Communities: Dementia awareness for CALD communities

TEDGlobal – How I'm Preparing to Get Alzheimer's: For families, steps on how to prepare for Alzheimer’s

Resources

Dementia Australia – information and resources

Information | Dementia Australia

Dementia Training Australia – GP management plans
https://dta.com.au/resources/gp-management-plans/

Clinical Practice Guidelines + consumer version
https://www.dementia.org.au/resources/clinical-practice-guidelines

DSA Behaviour Management: A Guide to Good Practice. Managing Behavioural and Psychological Symptoms of Dementia
https://dementia.com.au/resources/library/behaviour/behaviour-management-guide.html

‘10 questions to ask’ NSW Nursing and Midwifes Association put together with AC round table including GPs
https://carerscircle.com.au/2021/09/21/10-questions-to-ask-about-dementia-care-in-residential-aged-care/ ?

A guide to living with dementia

Forward with Dementia

GP quality indicators
https://www.racgp.org.au/running-a-practice/practice-management/general-practice-governance/clinical-indicators

Dementia Training Australia GP podcast
https://dta.com.au/dementia-in-practice-now-were-talking/

Dementia Research Collaboration resources https://dementiaresearch.org.au/resources_categories/lived-experience/

Dementia in Australia 2021
https://www.aihw.gov.au/reports/dementia/dementia-in-aus/contents/about

Dementia Australia information and support
Home | Dementia Australia

AIHW Dementia data gaps and opportunities report 2020
Dementia data gaps and opportunities, Summary - Australian Institute of Health and Welfare (aihw.gov.au)

FAQ

What is dementia?

Dementia is a broad term used to describe the gradual loss of someone’s memory, intellect, ability to think rationally and social skills. Dementia is not one specific disease, but a collection of symptoms of a long-term brain disorder such as Alzheimer’s disease or vascular dementia.

Dementia affects around 1 in 15 Australians aged 65 and over. While dementia is more common in older people, it is not considered a normal part of ageing. People in their 40s and 50s can sometimes get dementia as well. This is known as younger onset dementia.

What are the signs of dementia?

Over a period of months or years, people with dementia may:

• lose their memory — at first for recent events, and later for events further back in their lives
• struggle with speech and language
• show changes in personality
• show poor judgement and lack of insight
• find it hard to complete everyday tasks, or care for themselves
• lose interest in things and activities they used to enjoy
• lose their sense of time and place
• sleep irregular hours

If you develop dementia, it may be a long time before you notice any changes. But remember that not all memory loss is due to dementia. Speak with your doctor if you feel that you or someone you care about is experiencing memory loss, behaviour changes or is less able to carry out everyday activities.

What causes dementia?

More than 100 different diseases can cause dementia. In most cases, dementia isn’t inherited from your parents — see more on genetics of dementia.

Alzheimer’s disease, the most well-known cause of dementia, affects nearly 7 out of 10 people with dementia. Alzheimer’s disease causes certain proteins and other chemicals to build up in the brain and as a result, cells will gradually die and cause the brain to shrink. These changes interfere with a person’s thinking and short-term memory, and results in dementia that worsens over time.

Vascular dementia is a broad term to describe dementia caused by problems with blood circulation to the brain. Some people develop dementia after several small strokes (multi-infarct dementia). Others develop dementia when high blood pressure and thickened arteries (Binswanger’s disease) cause poor blood flow.

Lewy body disease causes unusual round clusters of protein (Lewy bodies) to develop inside certain brain cells. These cells eventually break down and die, causing dementia.

Frontotemporal dementia (or Pick’s disease) is caused by gradual damage to the front and temporal lobes of the brain. In these cases, the first changes tend to occur in mood, behaviour and personality, rather than memory.

Alcohol-related dementia (or Korsakoff’s syndrome) is a form of dementia caused by excessive alcohol consumption. It’s thought that the brain damage is partly caused by a lack of vitamins due to consistent heavy drinking.

When should I speak to a doctor about dementia?

See your doctor for a full examination if you notice several of these signs:

1. Memory loss — forgetting things that should be familiar, and not remembering them later
2. Difficulty with familiar tasks — mixing up the steps in a task, such as making a meal then forgetting to eat it
3. Language problems — forgetting simple words or substituting incorrect words
4. Disorientation of time and place — getting lost on their own street, forgetting how they got somewhere or how to get home
5. Poor judgement — such as making risky moves when driving
6. Problems with abstract thinking — such as counting and doing finances
7. Misplacing things — putting things away in inappropriate places
8. Changes in mood or behaviour — such as rapid mood swings for no apparent reason
9. Changes in personality — becoming more suspicious, fearful, uninhibited or outgoing than before
10. Loss of initiative — becoming uncharacteristically passive or uninvolved in activities

It’s important not to assume someone has dementia based on these symptoms alone. Other treatable conditions such as depression, infections, hormone imbalances and nutritional deficiencies can also cause dementia-like symptoms.

How is dementia diagnosed?

An early diagnosis allows someone to get support quickly, or in some cases identify a treatable condition. Referral to a neurologist, a neuropsychologist and/or a geriatrician may also be appropriate.

Diagnosing dementia requires a full medical and psychological assessment. This may include:

• a detailed medical history
• tests to check the senses and movement
• mental tests for memory, concentration and counting skills
• blood and urine tests, such as a screening test to check for illnesses that cause dementia symptoms
• other specialist tests, such as a chest x-ray, ECG or CT scan

How is dementia managed?

Although there is no cure, it’s possible to slow the progression of dementia. Many people with dementia learn ways to cope with their symptoms, and improve their quality of life.

General care and support

If you care for or know someone who is living with dementia, it can make you feel frustrated and helpless. It’s important to have people around who take time to build empathy and trust, and help provide a safe and predictable environment. Your emotional and physical support will be a great help to the person when the world seems confusing and hostile.

In some cases, it’s helpful to make changes to a person’s home environment to help them feel less disoriented (e.g. clear instructions on how to open doors, alert devices if someone is prone to getting lost). Visit Health Victoria’s website for some ideas on creating 'dementia-friendly environments'.

Psychological therapies

Certain ways of talking may help people with dementia feel supported and may build trust:

• Validation therapy — Instead of challenging their reality, build empathy by speaking to their feelings. For example, if a person with dementia is waiting for a spouse — now deceased — to return from work, acknowledge and empathise with their feelings.
• Music therapy — People with dementia often remember old familiar songs, tunes that unlock memories and feelings.
• Reminiscing — Remembering past events (e.g. reading an old letter, looking at childhood photographs) can trigger positive memories and feelings, even if a person can no longer speak. A visual diary or 'This is Your Life' book can offer pleasure and pride for a person who feels confused about the present.

Medicines

While there is no drug available to cure dementia, medicines can help with the following symptoms:

• Memory and thinking: Cholinesterase inhibitors and memantine work by changing the level of certain brain chemicals. They can improve memory, thinking and daily functions for a time.
• Delusions or hallucinations: Antipsychotic medicines are sometimes used to treat serious delusions and hallucinations, agitation and aggression. However, they can cause unwanted side effects and may increase risk of stroke in some patients.
• Depression: People with dementia often experience clinical depression. Antidepressants may be prescribed in some cases.
• Anxiety: People with dementia sometimes receive antipsychotic medicines and benzodiazepines (antidepressant medicines) to treat depression and panic attacks.
• Sleep: Some drugs for dementia can make it difficult to sleep at night. Sleep-inducing drugs should be used carefully since people can become dependent on them.

Can dementia be prevented?

Because the causes of dementia are not yet fully known, there is no sure way to prevent dementia. However, you can reduce the risk of dementia by caring for your:

• Heart health — What’s good for your heart is good for your brain. Have a healthy diet and stop smoking.
• Body health — Regular physical activity increases blood flow to the brain. Keep an active lifestyle.
• Mind health — An active mind helps build brain cells and strengthens their connections. Stay social, play games like puzzles and crosswords, and take up new hobbies and languages.

How do I care for someone with dementia?

Coordinate their care — Your loved one will need more care as time goes on. It can be helpful to designate one person who coordinates care and helps them put together a care plan.

Plan ahead — It is wise to plan early for the future. Encourage them to arrange for a trusted person to manage their affairs through a power of attorney, and to draw up an advanced care directive explaining what treatments they would prefer if they become unable to give consent later on.

Care for yourself — Looking after a loved one with dementia can be tough and draining. Make sure you spend time socialising and meeting other people. Find activities and interests you can draw encouragement from. Give yourself space to rest, grieve and appreciate your loved one.

For more information -  Dementia Australia