Better health and ageing for all Australians

Dementia

Information for people with dementia, their families and carers

This section of the website contains information for people with dementia, their families and carers.

In this section:

    I am worried about my memory. What should I do? I am worried about someone else’s memory. What can I do?

    If you have noticed these signs in yourself or someone else, there are some things you can do to help:
    • Find out more about dementia to get a clearer understanding of what the changes may be or may mean;
    • Keep a note of the signs you are seeing – in particular their frequency, duration and effect;
    • Discuss the changes you have noticed with the individual, or trusted family members or friends; and
    • Develop strategies to support the person in managing these changes, for example using written and verbal reminders, calendars and whiteboards and developing a set routine.
    In addressing your concerns it is important to be respectful and honest to yourself, family and those around you.

    Often family members and friends are the first ones to notice the early symptoms of dementia. Individuals themselves may not be aware of the changes or may find it difficult to acknowledge or discuss the changes they are experiencing.

    Further action should be taken if the changes:
    • Become more frequent or affect the individual’s ability to do the things they have previously been able to do;
    • Become progressively worse or affect more areas of daily life;
    • Become increasingly noticeable to others such as family members or friends;
    • Are outside the ordinary for the person (for example a very organised person becoming disorganised or an outgoing person withdrawing from social activities); and
    • Are worrying or causing stress to the individual themselves or those around them.
    If you are concerned about your memory or the memory of someone close to you, it is recommended that you speak to your GP about your concerns or call the National Dementia Helpline on 1800 100 500. (Free local call. Calls from mobile and pay phones may incur extra charges).
    Top of page

    Going to the Doctor – tips and strategies

    Taking stock of the situation and making the decision that something “needs to be done” can be stressful and emotional. Seeing the doctor can be the first step in a challenging process to secure a diagnosis, manage the outcomes and plan for the future. To ensure that you get the best outcomes from the appointment, it is recommended that you are informed and prepared.

    Before the appointment, talk to your family about the concerns you all have and the common things you have noticed or are worried about. It is also important that you discuss these and get a consensus about what changes are apparent and the degree to which they impact on your life and those around you.

    Some things you might like to consider thinking about or taking to your appointment include:
    • Medical and family history – including whether or not dementia is common amongst your ancestors and current medications;
    • Common symptoms that are experienced and their frequency. If you have kept a diary or record it would be useful to bring it to the appointment;
    • Clear examples of common or out of the ordinary day-to-day scenarios you have experienced; and
    • A list of pre-prepared questions and things you want to ask around symptoms, treatment, testing and diagnosis and future management.

    Diagnosing Dementia

    Confirming a diagnosis of dementia can be challenging, particularly as dementia affects different people in different ways. Dementia can also be caused by over 70 conditions so it is important to identify, assess and diagnose appropriately.

    There are a wide range of diagnostic tests and training programs that can assist you in diagnosing and treating those living with dementia and their families.

    The Dementia Outcomes Measurement Suite identifies 36 instruments which are deemed suitable for use in diagnosing and screening for dementia, and taking care of a person with dementia. The General Practitioner Assessment of Cognition instrument has also been recently developed to assist screening for dementia in the primary care setting. This instrument is available as a web-based test and can be accessed from the General Practitioner Assessment of Cognition website.

    You can download a copy of the Dementia Outcomes Measurement Suite Final Report on the Ageing Research Online website (note that the Report is a large file and may take a while to download).

    Coping with a dementia diagnosis

    It may seem overwhelming to think about what you should do once you have been diagnosed with dementia. Three things to consider are:
    • Taking control - by understanding what will happen to you and finding out what can be done to manage the coming changes;
    • Planning ahead - in relation to living alone, driving, work, money matters and legal issues; and
    • Talking to family and friends - what do you want to tell them and how can you discuss and understand what is happening.

    There are a number of training courses, workshops and seminars available for both people with dementia, carers and family and friends to help understand dementia, how to deal with memory loss issues and management techniques.

    There is also a range of services available to assist you in taking control of your condition, including counselling, information and training, service referrals and services to help you to maintain your social and community connections, i.e. transport and social groups.

    It is important to look after yourself and keep involved and active and maintain your normal activities and daily routines as much as possible. There are also a diverse range of supports and services that can assist you to manage your lifestyle and independence for as long as possible. Contact the Aged Care Information Line on 1800 200 422 for information on a range of aged care services and supports available locally and nationally. Coordination and advice can also be provided to access respite services, counselling and emotional support for carers.

    While it is important to maintain your life and lifestyle for as long as possible, it is also important to prioritise and plan ahead for your future as your dementia advances. It may take several years for someone to progress to the final stages of dementia, so it is important to plan ahead and make sure you and your family can manage future changes and decisions. It is important that plans are made in the early stages of dementia as in the final stages, people may not have the capacity to make their own decisions or informed choices about their personal care and management including medical treatment, financial or legal decisions.

    It may be a good idea for you to talk to your family and care providers as early as possible about who should make these decisions and agree on what should be done in particular circumstances.

    All States and Territories have options about how you can appoint a Power of Attorney. This allows someone else to make decisions on your behalf. These decisions may include your care and legal and financial choices but you can determine what and how the decisions are made.

    The person who is appointing a Power of Attorney needs to be able to understand the implications and consequences of what they are doing or the appointment will not be legally valid. For this reason it is important to make these decisions sooner rather than later.

    The process for the appointment of a Power of Attorney is different in each State and Territory. Further information about the process in each State and Territory is available from the links below:

    Dealing with changes in people with dementia

    This page gives information on the variety of services and supports that are available to assist people to cope with and manage changed behaviours.

    It is common for people living with dementia to experience changes to their behaviour and emotions. While common, these behaviour changes can be distressing for both the person living with dementia, their carers, family members and friends. There is a variety of services and supports that are available to assist people to cope with and manage changed behaviours.

    It is important to discuss changed behaviours with your doctor and to get the help you and your family need to manage and minimise the impact of the behaviour. There are also a number of small steps you can take which may minimise the effect of the behaviour including:
    • Maintaining a routine with regular activities and tasks;
    • Investing time in activities that are soothing and calming to the person with dementia;
    • Maintaining (as much as possible) a stress free environment;
    • Continuing to maintain open communication that is quiet, safe and peaceful;
    • Trying not to take the behaviour personally and recognising it as a symptom of dementia; and
    • Seeking help and support from health professionals and service providers as well as family members and friends.
    There are a number of common behaviour changes associated with dementia including:
    • Aggression;
    • Repetitive behaviour;
    • Wandering; and
    • Sundowning – where the person may become more confused, restless or insecure late in the afternoon or early evening.
    The Dementia Behaviour Management Advisory Service can help you to respond to and manage behaviours that are impacting on the care of the person with dementia. DBMAS offers 24 hour a day telephone support on 1800 699 799 (Free local call. Calls from mobile and pay phones may incur extra charges).
    Top of page

    Stages of Dementia

    Information identifying the different stages of dementia

    Dementia affects people in different ways. The experiences and progression of dementia may take a few months to several years and is generally divided into three phases although this too can vary depending on the individual. The phases are:
    • Mild or early dementia - often only apparent in hindsight as the onset of dementia can be gradual and easily attributed to old age or stress;
    • Moderate or middle dementia - where problems become more apparent and challenging and require someone to manage or provide assistance to the person with dementia; and
    • Severe or late dementia - where the person requires high-level care and support with daily living.

    Mild or Early Stages

    In the early stages of dementia the symptoms may progress more slowly than in the others. In fact, it is possible that the early symptoms are mistaken as being part of the ageing process. It is important to remember that not all persons with dementia experience all of these symptoms, dementia affects different people differently.

    Symptoms include: moderate loss especially for recent events, some disorientation in time, moderate difficulties with problem solving, reduced interest in hobbies, and the need for prompting regarding personal care tasks.

    Moderate or Middle Stages

    In the middle stage symptoms become more obvious and severe, increasing levels of assistance are required to help the person maintain their function in the home and community.

    Symptoms include: severe memory loss, considerable difficulty orienting to time and place, obvious difficulties in finding words, severe impairment of judgement and problem solving, need for assistance with personal care tasks and emergence of behavioural difficulties (for example wandering, aggression, sleep disturbance and disinhibited behaviour).

    Respite care can be very useful during this stage of dementia. Respite care offers an opportunity for families and carers to take a break, refresh their energy and avoid burnout. It also allows the person with dementia to become used to being cared for by others, which can make the transition to residential care easier.
    Top of page

    Severe or Late Stages

    In the final stages of dementia the person may need constant care. They may lose the ability to respond to people and their environment and may not be able to perform basic tasks without assistance. This stage is characterised by almost total dependence on the care and supervision by others.

    Symptoms include: very severe memory loss, very limited language skills, unable to make judgements or solve problems, regularly not recognising familiar people, frequent incontinence, requires substantial assistance with personal care, and increased behavioural difficulties.

    Care Planning

    Good planning can make many aspects of living with dementia easier and less stressful. Whether it is planning for the near future or longer term planning, it will help both you and your family to know what is coming, take control in advance and have strategies in place to deal with particular situations. By discussing and putting in place your future care plan and wishes you are helping to manage your care needs whilst minimising the stress placed on you and your family.

    Your care plan may include:
    • Short-term respite care – having the necessary assessments and enjoying regular respite care that meets your care needs through in-home or residential respite. Regular respite care can also make the transition to residential care in the later stages of dementia easier for you and your family; and
    • Long term care – can include community care options such as the Extended Aged Care at Home Dementia program and residential care options. Making the transition to long-term residential care can be one of the most difficult decisions people with dementia and their families have to make. It is important to be aware of and discuss your options so that when the time comes for permanent care, you and your family can feel assured that you are taking action which respects everyone’s wishes and meets everyone’s needs.
    Examining care options can be confusing for you but is important to ask questions and work out the most appropriate care for you.

    Information and services for family, friends and carers of people living with dementia

    Caring for a family member or friend with dementia can be both a very rewarding and challenging experience. It can also be very physically, emotionally and financially demanding and affect your lifestyle and life choices.

    As the dementia progresses, the need for care and support increases. It is important that carers take the time to look after themselves and to respond to their own needs and emotions.

    There are a number of services and supports provided by the Australian Government to support Carers. These include providing assistance in the areas of:
    • Respite care – including emergency, in-home and residential respite;
    • Counselling – to assist you in coping with the caring role and the emotions associated with it, including grief, loss and stress;
    • Information, education and training;
    • Service referral and support; and
    • Financial support (through Centrelink).
    It is important that carers are supported to remain socially connected, informed and supported.

    Contact the Aged Care Information Line on 1800 200 422 for information on a range of aged care services and supports available locally and nationally.
    Top of page