Living with Dementia
Department of Veterans’ Affairs
A guide for veterans and their families
Living with Dementia
Department of Veterans’ Affairs
A guide for veterans and their families
ACKNOWLEDGMENTS
Living with Dementia – A Guide for Veterans and their Families was produced by Alzheimer’s Association Australia in consultation with staff from the Health Promotion Section of the Department of Veterans’ Affairs. In producing this booklet, DVA wishes to thank a number of people who have each made a valuable contribution to the information it contains. Those people are:
Enquiries to:
Health Promotion Section Department of Veterans’ Affairs P O Box 21 WODEN ACT 2606
• The carers who shared their personal experiences, joys and heartaches as carers – thank you again for your special contribution.
Main cover photograph by Lynton Crabb© (Courtesy of Alzheimer’s Association Victoria)
• Ms Christine Boden, who unselfishly provided DVA with an insight into her experiences with early onset dementia, parts of which feature as the story on page 4.
Disclaimer
• Dr Graeme Killer, Principal Medical Adviser and Dr Helen Hanson, Senior Medical Adviser, DVA, for their clinical advice and suggestions in several chapters of the document. • Mr Wes Kilham, Principal Director, Vietnam Veterans Counselling Service, DVA, for his significant contribution to the chapter on younger onset dementia. • Carers Association of Australia for their help and advice. This booklet replaces an earlier publication about dementia, Dementia – A Practical Guide for Carers written in 1995 by Mr Stephen Medza of DVA, which has been widely acclaimed in assisting the carers of people with dementia. This booklet builds on the success of that guide. Thanks to the people involved with the production of the earlier booklet, who have made our task so much easier.
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This work is copyright. Apart from any use permitted under the Copyright Act 1968, no part of this work may be reproduced or copied by any process without written permission of the publisher. Requests and inquiries concerning reproduction and rights should be addressed to the Department of Veterans’ Affairs, Canberra. The Commonwealth of Australia shall not be responsible for the results of any actions arising out of the use of any information in this publication nor for any errors or omissions contained therein. The publisher, the Department of Veterans’ Affairs, and the authors expressly disclaim all liability to any person in respect of anything and of the consequences of anything done or omitted to be done by any such person in reliance, whether whole or partial upon the whole or any part of the contents of this publication. Copyright. Commonwealth of Australia© 2001 ISBN 0 642 47681 0
This booklet can be obtained on the Internet at www.dva.gov.au
INTRODUCTION
Living with Dementia has been written to provide information and support for people with dementia, their families and carers. Latest estimates indicate that many thousands of members of the ex-service community may have some form of dementia. A large number of people, usually spouses and relatives, care for many of those with dementia. Quite often, carers are in their advanced years and sometimes not in good health themselves. Dementia presents challenges for both those with the condition and those caring for them. The ability to manage dementia and maximise quality of life can be enhanced if the appropriate information and supports are available.
DVA has a number of programs and resources available to assist carers. This booklet complements those programs and resource materials. Information is also included for people who are in the early stages of dementia and those who have been diagnosed with younger onset dementia. This information will help people to understand their condition and how it may affect their lives in the future. This will help people with dementia to make better decisions regarding their future. DVA recommends this booklet for families, carers and those members of the ex-service community who are affected by dementia.
Department of Veterans' Affairs
The Department of Veterans’ Affairs (DVA) recognises the role carers play is both significant and demanding, and is committed to providing appropriate supports to assist them with caring. Without these supports, some members of the ex-service community would have no alternative but to be admitted to a residential care facility which is not usually their preferred choice.
CONTENTS
About Dementia What is dementia? What are the early signs of dementia? Who gets dementia? If you suspect dementia Treatment for dementia Younger onset dementia Dementia and younger veterans Where to get help
1 2 3 3 3 4 5 6
Planning Ahead
Department of Veterans' Affairs
Legal and financial planning Where to get help
7 8
Looking After Yourself If you have dementia Where to get help If you are caring for someone with dementia Where to get help
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9 10 11 12
Practical Aspects of Caring Dementia and the environment Communication Activities Safety Driving Hygiene Intimacy Continence Sleeping Wandering Behaviour changes Where to get help
14 14 15 15 16 16 17 18 18 19 19 21
Finding out about residential care Choosing a residential facility Where to get help
23 24 25
Useful Publications
26
Useful Contacts
28
Department of Veterans' Affairs
Residential Care
ABOUT DEMENTIA
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When my mother first started to show signs of what our family called "senile dementia", she was living alone in Melbourne. Both her children had moved away from Melbourne to pursue their careers, my sister overseas and I to Canberra, but she had good friends who visited frequently. After her 70th birthday, there was a fairly rapid deterioration in her ability to organise herself and she seemed to lose interest in doing things. For a while she struggled on with encouragement from her daughters to keep as active as possible, but gradually she seemed to retire within herself. Her friends were marvellous, reaching out to keep her in their world, collecting her for functions, taking her to Church, to meetings, to Anzac Day and other commemorations and giving her their love. As her living conditions deteriorated, I became more concerned, but there was little I could do from Canberra. It was very frustrating and worrying.
’’
What is dementia? The word dementia is used to describe the symptoms of a large group of illnesses which affect the brain and cause a decline in a person’s mental functioning. Memory loss and the progressive deterioration in the ability to perform previously familiar tasks, including problems with language and mathematical skills, are usually evident.
disease which attacks the brain resulting in impaired memory, thinking and behaviour. The build up of abnormal materials in the brain disrupts messages within the brain, damaging connections between brain cells. This leads to the eventual death of the brain cells and prevents the recall of information. Vascular dementia
There are many different types of dementia. Some of the most common are:
Vascular dementia is the broad term for dementia associated with the problems of the circulation of blood to the brain. Vascular dementia can be very difficult to distinguish from other forms of dementia and is usually diagnosed through neurological examination and brain scanning techniques.
Alzheimer’s disease
Alzheimer’s disease is the most common form of dementia, accounting for between 50% and 70% of all cases. It is a physical 1
One form of Vascular dementia is Multi-infarct dementia. This is probably the most common form of vascular dementia and is caused by a number of small strokes. The strokes cause damage to the cortex of the brain – the area associated with learning, memory and language. A person with Multi-infarct dementia is likely to have better insight into their condition in the early stages.
What are the early signs of dementia? The early signs of dementia can be very subtle and vague and may not be immediately obvious. Usually though, people first seem to notice that there is a problem remembering recent events. Common symptoms may include: Changes in Memory • repeating the same questions or stories • being absent-minded or forgetful • losing valuables, keys, wallet • getting lost in once familiar environments.
Alcohol related dementia
This form of dementia is related to the excessive drinking of alcohol and affects memory, learning and other mental functions. Anyone who drinks excessive amounts of alcohol over a period of years may develop alcohol related dementia.
Changes in Orientation • difficulty remembering the year, date, month, day • difficulty remembering the names of friends, loved ones, home address.
Frontal lobe dementia, including Pick’s disease
Frontal lobe dementia is the name given to any dementia caused by damage to this part of the brain. It includes Pick’s disease, but can be caused by other diseases. Damage leads to alterations in personality and behaviour, changes in the way a person feels and expresses emotion, and loss of judgement.
Changes in Behaviour • impaired judgement • poor planning and organising ability • deterioration in appearance and hygiene • behaving in ways which are not normally the way the person would behave, such as swearing more, or becoming more withdrawn.
These diseases tend to occur in younger people who develop personality changes and language difficulties early in the disease, with memory loss following later.
Changes in Emotions • easily aroused, readily changed moods • unable to handle stress or noise, perhaps becoming agitated • withdrawing socially • losing drive and interest in things which used to provide interest and motivation such as fishing, bowls, clubs.
Other common conditions that may produce, or be associated with dementia are:
• AIDS • Huntington’s disease • Parkinson’s disease • Multiple Sclerosis • certain types of head injuries • brain tumours and brain haemorrhages • infections of the brain • exposure to certain toxins.
Changes in Thinking • less flexible, more rigid • difficulty mastering new tasks • difficulty finding the right word, reduced language fluency • difficulty starting new topics, thinking beyond the present • mundane conversation, repeated phrases, words, ideas. 10
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Who gets dementia?
Treatment for dementia
Dementia affects people from all walks of life, male and female, rich and poor. Most people with dementia are older, although in some cases dementia affects younger people in their 30s, 40s and 50s. Over the age of 65, it affects one person in 50. The risk rises to one person in five by the age of 80.
So far it has not been possible to halt the decline caused by most dementias. However, a large number of drugs are currently under development and some have been shown to provide temporary relief from the symptoms in some people.
If you suspect dementia If you are concerned that you or a member of your family may have dementia, it should be checked out as soon as possible. The first step is to see your local doctor. They will do a thorough assessment to rule out or treat any reversible causes of the symptoms. Assessment should include a detailed history, questions about memory and mood, physical examination, blood tests and often a CT scan of the brain. The doctor may refer you to a specialist, such as a neurologist, psychiatrist or psychogeriatrician, or to an Aged Care Assessment Team.
A small number of drugs have now been listed on the Pharmaceutical Benefits and Repatriation Pharmaceutical Benefits Schedules. These will be made available at a subsidised rate to people with Alzheimer’s disease who meet the strict criteria. These drugs can also be purchased at full cost. Dementia can be associated with a number of symptoms which can be very distressing. These include depression, anxiety, hallucinations, ideas of persecution, agitation and aggressive behaviour. Often these symptoms will not require medication and people may respond to reassurance, a change in the environment or removal of something that is upsetting. However, sometimes they may require medication for relief. All medications should be discussed with your local doctor or specialist. Much can also be achieved by educating carers and raising community awareness. This book provides practical suggestions and strategies to assist carers and link them to further information and support groups.
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Younger Onset Dementia
‘‘
I have experienced the stigma of dementia, being diagnosed with Alzheimer's disease in 1995, at the age of 46. As a single mother of a 9, 14 and 19 year old with a busy job, retirement due to dementia was not what I had planned as my next career move! Other younger people have lost businesses or been fired because of declining performance, usually well before they realised anything was medically to blame for their problems. They can face an uphill battle seeking pensions. For me, it's now such a struggle to get through each day, I am tired just pottering about the house, making a huge effort to remember what today is, and what is happening today, and what I plan to do today. No-one really understands how hard it is to live life like this, so everyone seems to trivialise how you feel, patronise you, and make out they feel the same way.
’’
Many symptoms that may look like dementia may in fact be other conditions which are treatable.
Although most dementias affect people who are elderly, sometimes younger people are diagnosed with dementia. Dementia has been diagnosed in people in their 50s, 40s and even in their 30s, although this is not common. For this reason, dementia can be difficult to diagnose and its incidence in the community is still not clear.
People with younger onset dementia and their families, have a number of extra burdens because the dementia appears when most people are enjoying a full and independent lifestyle. When diagnosed they are likely to be: • in full-time employment • actively raising a family • financially responsible for the family • physically strong and healthy.
Younger onset dementia, sometimes known as early onset dementia, is the term usually used to describe people under the age of 65 with any form of dementia. A correct diagnosis is essential, and this may involve a thorough physical and neurological investigation, a full psychiatric assessment and psychological testing.
Generally people at a younger age are more active. This sometimes has the effect of making behaviour changes more extreme.
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Dementia and Younger Veterans The importance of a correct diagnosis
DVA frequently uses the term "younger veterans", primarily to distinguish between veterans of the Vietnam era and subsequent peacekeeping missions, from those of earlier conflicts. Many of these younger veterans are now in their early to late 50s, with some over 70 years of age.
As already mentioned, a correct diagnosis is essential. Good diagnostic services are available, as well as support and counselling for family members.
Alcohol: a significant risk
The Vietnam Veterans’ Health Study (2000) examined a range of conditions including posttraumatic stress disorder (PTSD) in veterans. This study found that a few conditions were elevated against community norms, suggesting a possible association with war service. However, there is no evidence of any linkage between war service and dementia amongst veterans.
Alcohol and substance abuse are significant problems in the younger veteran community. People who drink high levels of alcohol on a regular basis are likely to be at greater risk of developing alcohol related dementia.
What can be done to help?
PTSD and depression were found to be higher in younger veterans. Some of the symptoms of severe depression such as confusion, poor memory, lack of ability to concentrate, decreased organisational capacity, disturbed sleep and apathy, can often appear similar to dementia. Severe anxiety states can also mimic some aspects of dementia. However, with appropriate treatment these symptoms can either be managed successfully or even eliminated.
There are many sources of help for veterans with mental health problems. These include services from a wide range of DVA providers, service, such as the Vietnam Veterans Counselling Service and programs accredited by the Australian Centre for Posttraumatic Mental Health.
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Where to get help
Your doctor
Only a doctor can diagnose dementia. Your local doctor is often the first person you will talk to about your concerns. They may assess for dementia, or may refer to a specialist, such as a geriatrician, psychiatrist or psychogeriatrician.
Aged Care Assessment Teams
Aged Care Assessment Teams (ACAT) consist of doctors, nurses, social workers and other health professionals who can help you work out what kind of care will best suit your needs when extra assistance is required. Your doctor can refer you to your closest ACAT, or you can find them by contacting the Dementia Helpline on 1800 639 331.
Alzheimer’s Association
Each State and Territory has an Alzheimer’s Association which can provide further information, counselling and support for people with dementia, their families and carers. The Alzheimer’s Association produces a large number of Help Sheets on a variety of dementia related topics. These include Help Sheets written especially for people with dementia, as well as Help Sheets for families and carers. Help Sheets are free of charge to people with dementia, their families and carers and can be obtained by calling the Dementia Helpline on 1800 639 331. Help Sheets can also be obtained on the Internet at www.alzvic.asn.au
Department of Veterans’ Affairs Veterans’ Affairs Network The Veteran’s Affairs Network (VAN) is an information service set up by DVA to promote the independence and well being of members of the veteran community in their local environment.
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VAN’s role is to: • answer questions and provide information about DVA pensions and allowances, and about health care eligibility. • provide up-to-date information and advice on the health and support services available through DVA and the community. • work with local service providers to ensure that veterans and war widows/widowers have access to appropriate services. • work with community agencies to develop programs to meet the needs of veterans, war widows/widowers and their dependants. A contact list for all DVA State offices and VAN offices is included on page 28. Fact Sheets DVA has fact sheets available on over 300 topics of relevance to veterans, war widows/widowers, their dependants, families and carers. These fact sheets are available from your local VAN office and on the Internet at www.dva.gov.au Rehabilitation and Counselling Services The Vietnam Veterans Counselling Service (VVCS) provides free and confidential counselling in a supportive atmosphere for veterans of all conflicts and their immediate families. VVCS centres provide individual, relationship and group counselling, family therapy, support for families and carers, telephone counselling, self-help and lifestyle management programs and referral services. Contact the VVCS in your State or Territory. A contact list is included on page 31.
PLANNING AHEAD
Conditions of Enduring Power of Attorney can vary from State to State, so always seek advice before granting or accepting an Enduring Power of Attorney.
Legal & Financial Planning Even though dementia affects everyone differently, sooner or later the abilities of the person with dementia will decline and they may become unable to make their own decisions about their financial, legal and health matters. Managing these matters will often become the responsibility of families and carers.
Wills
A will gives instructions as to how the estate of a deceased person should be distributed. It’s important to keep your will up to date. Make sure that someone you trust knows where your legal documents are kept.
Planning ahead can make it easier for everyone as dementia progresses. It can also mean that the person with dementia may be able to take part in the planning and know that their wishes will be carried out in the way that they would like them to be.
Some States and Territories have additional arrangements that can be made to help with early planning.
Most planning depends on the person with dementia being legally competent – that is – able to understand the implications of what is being discussed and signed. If they are legally competent there are a number of plans that should be considered to help with the future.
Guardianship and Administration
A Guardianship Board or Tribunal is set up in each State and Territory and can appoint a guardian or administrator for a person who is no longer able to make decisions for themselves. If there are problems dealing with the affairs of a person with dementia, or there is conflict in the family about the person’s best interests, an application for the appointment of a guardian or administrator may need to be discussed.
Enduring Power of Attorney
An Enduring Power of Attorney is a legal arrangement for one person to look after another’s financial affairs if they become unable to do so themselves. An Enduring Power of Attorney continues until death.
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Where to get help
A solicitor, the Law Society or Law Institute, local community legal centre or Legal Aid in your State or Territory can all help you plan ahead. Planning Ahead: A guide to putting your affairs in order This kit is an excellent guide to preparing for, and coping with, bereavement. It can help you and your family to get your affairs in order and to keep all your personal papers up-to-date in a safe place. The kit includes personal information sheets and checklists, which ensure that all relevant information is available when you need it, and a booklet that lists the services that are available to help you, your family and friends. The kit is available from your local VAN office or by calling 1300 55 1918. You and Your Pension: A guide for service pensioners and for war widows and widowers who receive the income support supplement This guide contains information about pensions, services and benefits, health, personal finances, lifestyle issues, and your rights and obligations.
The guide is also available on audio cassette for people who have difficulty reading standard print. The guide is available from your nearest DVA State office or VAN office. Veterans’ Affairs Financial Information Service (VAFIS) VAFIS staff provide a free service to help maintain the standard of living of pensioners by advising them on how to use their money to their best advantage. VAFIS staff can provide information on investments, superannuation, the Pensions Loans Scheme, lump sum advances, and basic taxation issues. Contact your nearest DVA State office or VAN office for details. A contact list for all VAN offices in Australia is included on page 28. You can also call Centrelink, which provides most financial assistance for people with illness and disabilities, and their carers, on 13 27 17. You may be eligible for some payments and concessions from Centrelink. The Dementia Helpline can be contacted on 1800 639 331, and Carer Resource Centres on 1800 242 636. Both can provide advice on who to contact in your State or Territory.
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LOOKING AFTER YOURSELF If you have been diagnosed with dementia
• try to establish a regular daily or weekly routine, which can help reduce reliance on your memory. • put up a white board or pin board in a prominent place such as the kitchen for writing up important things to remember for the day or week. • keep a special spot for important items such as glasses, wallets and medicines.
You may have been wondering what is happening to you for some time now and have probably been worried and anxious about the changes you’ve noticed. You may feel angry, frustrated or upset about the changes in your life, but remember that: • you are still the same person. • the changes you are experiencing are because of a disease of the brain – dementia. • you will have good days and bad days • each person is affected differently and symptoms will vary. • you are not alone. There are people who understand what you are going through and can help.
The Alzheimer’s Association has a number of publications with more practical ideas for managing with memory loss.
Driving
Having a diagnosis of dementia doesn’t necessarily mean that you have to stop driving immediately. However, your illness will eventually affect your ability to drive safely.
There are ways to help you remain as independent as possible and continue to enjoy life for a long time to come. Look after your health
In your own interests, and for other people’s safety, you may need to consider if any changes in your abilities mean that you should consider giving up driving. This can sometimes be hard to judge for yourself. Ask your doctor for advice on your capacity to continue driving safely. You can also arrange to have a driving test for an objective assessment of your driving.
Try to: • exercise regularly • eat a well balanced diet • rest and relax • continue with activities you enjoy. Look after your feelings
The changes caused by dementia may bring about a range of different emotions. This is very common and it may help you to share them with someone you trust. You may like to join a support group and meet others who have dementia to share experiences and ideas for coping with dementia.
Other tips for looking after yourself
• Give yourself more time to do things. • If something is difficult, try to take a break for a while. • If you’re having trouble finding the right words to express your thoughts or understanding what people are saying, take your time and tell them that you have a problem with communication.
Managing with memory loss
Some suggestions that may help you manage with memory loss are: • keep a diary or notebook of important things to remember and try to keep it with you. 9
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Department of Veterans’ Affairs
Where to get help
Veterans’ Affairs Network
Alzheimer’s Association Each State and Territory has an Alzheimer’s Association which can provide further information, counselling and support for people with dementia and their families and carers. The Alzheimer’s Association has a number of Help Sheets written especially for people with dementia: About You…What is dementia? About You…Early Planning About You…Looking After Yourself About You… Driving and Dementia About You… Living Alone Help Sheets are free of charge to people with dementia and can be obtained by calling the Dementia Helpline on 1800 639 331. Help Sheets can also be obtained on the Internet at www.alzheimers.org.au Living With Memory Loss is an easy to read book written especially for people with dementia. You can get a copy by calling the Dementia Helpline on 1800 639 331.
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The Veterans’ Affairs Network (VAN) is an information service set up by DVA to promote the independence and well being of members of the veteran community in their local environment. VAN’s role is to: • answer questions and provide information about DVA pensions and allowances, and about health care eligibility. • provide up-to-date information and advice on the health and support services available through DVA and the community. • work with local service providers to ensure that veterans and war widows/widowers have access to appropriate services. • work with community agencies to develop programs to meet the needs of veterans, war widows/widowers and their dependants. A contact list for all DVA State offices and VAN offices is included on page 28, or you can call 1300 55 1918
LOOKING AFTER YOURSELF If you are caring for someone with dementia
‘‘
…….as my father’s Alzheimer’s disease was in the early stages and was not obvious to outsiders nor diagnosed, many of my mother’s friends and acquaintances thought it was my mother, not her husband, who had a health problem. My sister and I found this hurtful, frustrating and confusing. My mother sometimes questioned whether, in fact there was anything wrong with her husband and whether his odd behaviour and poor short-term memory was in her imagination. My mother also wondered if she was the one who had something wrong and who even had Alzheimer’s disease! My mother was extremely stressed and distressed. As well as this, adverse comments by others did nothing to allay my mother’s fears, nor support her in her daily trauma of coping at home alone with my father.
’’
Some carers find it difficult to take breaks or use respite. Some feel guilty leaving the person with dementia in someone else’s care, or perhaps the person doesn’t want to be without you, even for a short time. If you are finding it difficult taking a break, talk to someone about your feelings.
Caring for someone with dementia can be very demanding. Burnout, due to stress, combined with physical exhaustion can happen to even the most dedicated carer. It’s important to remember that you have needs and that you need to take positive steps to meet them. You will only be able to continue caring if you look after yourself on a regular basis.
Share your feelings
It can help to share your feelings. Chat to a trusted friend, relative, counsellor, or your doctor. Perhaps think about joining a support group where you can meet other carers and share your experiences of caring for someone with dementia.
Ways to take care of yourself
Take time for yourself. Try to continue with activities such as bowls, movies, concerts, church services and dinner with friends. Take regular breaks from caring, perhaps a day or evening, a weekend or a regular holiday. There are many respite services which will help you arrange a break.
Ask for help
No one can care 24 hours a day, 7 days a week without help. Many families and friends will offer assistance if you let them know how to help you. Many community agencies are set up to help carers in a variety of ways – perhaps by helping you arrange to take a break, or to give you information and advice about support services in your area.
It is important for both of you to have regular breaks. For you, so that you can keep up with activities you enjoy, relax and recharge your batteries. For the person with dementia it can mean new faces and activities to look forward to. 11
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Where to get help
Department of Veterans’ Affairs In-Home and Residential Respite The Government will pay a subsidy to a residential care facility for up to 63 days in a financial year for people who have been assessed as needing respite care. Subject to prior approval, DVA will pay the residential contribution for up to 28 of these 63 days for entitled veterans or war widows / widowers. In-home respite may also be available in certain situations for up to 28 days. Emergency short-term home relief (ESTHR) may be provided in a crisis situation. ESTHR funding will not normally exceed 7 days, and financial limits apply. Contact your local Carer Respite Centre on 1800 059 059 or DVA on 133 254.
Veterans’ Home Care
organisations, private agencies and the wider community. You can contact your local Carer Respite Centre on 1800 059 059 (freecall).
Carer Resource Centres Carer Resource Centres are a part of the Carers Association in each State and Territory and provide carers with information and referral to the range of community services and government assistance available to support them in their caring role. You can call your local Carer Resource Centre on 1800 242 636 (freecall) to speak to an experienced and friendly staff member and to receive a free carer information pack. The pack includes a range of practical information, such as how to prepare an emergency care plan.
Carers Associations
The Veterans’ Home Care program provides a wide range of services including respite care. Both Gold and White Card holders are eligible to be assessed for the program. For more information please refer to page 21.
In each State and Territory there is a Carers Association working to bring the needs, views and concerns of carers to the attention of the community as a whole, including government, policy makers, health professionals and service providers. Carers can call their State or Territory Carers Association on 1800 242 636 (freecall).
Contact your local VAN office or call 1300 55 1918 for more information. A contact list for all VAN offices is included on page 28.
Alzheimer’s Association
Carer Respite Centre This is a Commonwealth funded agency that keeps updated records of all available respite beds in the region. It also provides information and coordination of a full range of respite services. This includes respite programs funded through the Commonwealth and State Governments, non-profit
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Each State and Territory has an Alzheimer’s Association which can provide further information, counselling and support for people with dementia, their families and carers. The Alzheimer’s Association has a number of Help Sheets which are available free of charge to people with dementia, their families and carers.
PRACTICAL ASPECTS OF CARING
‘‘
We have our ups and downs with Mum. "Can’t find the toilet", so we removed the door. "Can’t find the way around in the dark" so we placed a sensor light in the hall. Mum cannot use the phone, or make a cup of tea, or dress herself properly, but her health is excellent. Mum has some reserve funds and with this we pay a lovely friend to take her out to various places such as the art gallery, concerts at the local club, and drives in the country. Mum enjoys a good week with three days at the day centre and two outing days with friends. We look after her on weekends. She still manages independent living in her own home, with our support. Little things such as leaving the gas fire on through the winter were difficult at first. Mum kept turning the gas off, but we taped the knobs and after lots of talking the gas fire is now acceptable to her. We had to disconnect the gas stove and buy a microwave. We prepare Mum’s meals and put them in the freezer and the respite care ladies come in every night, give her a meal and put her to bed.
’’
Dementia progresses differently for each person. Initially there may be only slight changes in personality and behaviour. The person with dementia may be less motivated to do things that previously interested them, or reluctant to part from familiar surroundings or routines.
and the ability to reason may deteriorate. People with dementia can suffer confusion, distress, mood changes and aggression as they struggle with the frustrations of everyday life. Following are some practical ideas for caring, many of them tips from carers and people with dementia.
However, the changes will become more noticeable. Concentration, understanding 13
Dementia and the environment It is widely recognised that buildings and environments can have a significant effect on a person with dementia. They can support them or hasten their deterioration. A person's home, because it is their home, can usually provide a far greater level of environmental support than even the newest and best designed nursing home or hostel. But sometimes the layout, appliances and amenities of the home may need to be modified to make them useable or safer for a person with dementia. The overall aim of any home modifications for someone with dementia is to make it possible for them to remain living at home for as long as possible. It may be necessary to continually assess each person's needs as changes occur in their abilities, taking into account the gradual ageing process in regard to vision, hearing and mobility. The best living environment for a person with dementia is one which helps them to be as independent and happy as possible. Whether a person's own home or a nursing home, the environment should: • be familiar. • be orientating – helping the person to know where they are or find where they want to go. • support independence – by compensating for skills which are deteriorating or lost. • engage participation in tasks and activities rather than promoting passivity and dependence. • promote confidence and self esteem – by helping people to succeed rather than fail with the everyday tasks of living. 10 14
• reinforce the person’s sense of identity – by stimulating their memory. • be physically and psychologically comfortable – with a comfortable temperature, good lighting, the right level of stimulation and minimal stress. • promote safety for the person with dementia and make caring tasks safer and easier for the carer – achieving a balance between safety, security and independence. The Department of Veterans’ Affairs Rehabilitation Appliances Program (RAP) may assist with the cost of aids and home modifications where needed.
Communication Losing the ability to communicate can be one of the most frustrating problems for a person with dementia. Some changes in communication you might notice include difficulty finding the right word, not being able to understand all of what is being said or difficulty expressing emotions appropriately. Reading and writing skills may deteriorate and there may also be age related problems with vision and hearing. Tips for caring
• Don’t rush, always allow plenty of time. • Keep sentences short and simple. • Try to avoid conversations that include a lot of questions that need to be answered. • Consider using hand and facial gestures to help understanding. • Try to avoid background noise such as TV or radio. • Encourage groups to use name tags to help with recognition.
Activities
Safety
Most people with dementia will need some assistance to carry out the activities which provide them with pleasure and enjoyment. t is important that activities promote the self-esteem of the person with dementia and maintain the skills that they still have.
Your safety, and the safety of the person you are caring for, is important. People with dementia function best in structured, quiet and uncluttered surroundings. Sometimes the layout, appliances and amenities of the home may have to be modified to make it safe for the person with dementia.
Tips for caring Tips for caring
• Make use of abilities that have not been forgotten. Perhaps helping around the house by washing up, or working in the garden. • Make activities simple and unhurried. • Don’t let activities increase stress. • People with dementia will have some times of the day when they perform better than others. Similarly their abilities may vary from day to day. Take this into account when organising activities. • Many people with dementia do not enjoy crowds or noisy environments. • If reading has deteriorated make use of a Walkman to listen to recorded messages or books. • Sensory experiences, such as massages, stroking an animal or brushing hair, can be enjoyable.
• Remove loose mats, power cords and extension leads from the floors. • Nightlights or sensor lights in the hallway and in the toilet may help find the way safely at night. • Automatic cut offs for hot water jugs and other appliances are recommended. • Place rails in the bathroom, toilet and next to the stairs. • Replace potentially dangerous forms of heating such as bar heaters with safer heaters like column heaters. • Make sure smoke detectors are correctly installed and batteries regularly checked. • Check safety in the front and backyards – keep paths well swept and check gate catches. • If you are lifting the person, make sure you get professional advice about how to do this safely, and about any aids that can help you. Back injuries are very common amongst carers.
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Driving
Hygiene
Many carers worry about the person with dementia who continues to drive.
It is quite common for people with dementia to forget, or lose interest in bathing or changing their clothes. Hygiene is sometimes a point of great conflict between a carer and a person with dementia.
Dementia will eventually affect the person’s judgement and ability to drive safely. Some people will recognise their declining ability and be prepared, or even relieved to be rid of the responsibility. Unfortunately, others may not recognise that they can no longer drive safely, or may simply forget that they can no longer drive. This can be a very difficult situation and needs to be handled sensitively.
Tips for caring
• Make sure that a person’s need for privacy is considered when undressing and bathing. Pull down blinds and close curtains and doors. • Keep bathing and showering simple – explain each step as you go. • Make sure that the bathroom is warm and comfortable. • Provide a safe environment by using nonslip mats, hand rails or a shower chair. • Try to develop a regular routine. • Arrange regular visits to the dentist to check on teeth, gums or dentures. You may need to help with teeth or denture cleaning, or even do it yourself.
Tips for caring
• It may be appropriate to suggest that a driving assessment is done. This gives an independent assessment of driving abilities. • Ask your doctor to talk to the person about their driving. Doctors have the authority to advise that licence testing is necessary. • Arrange outings which do not require the car to be driven. • If safety is a major concern, hide the car keys or immobilise the car. • The road transport and traffic authority in your State or Territory can advise you of any further steps that can be taken.
10
16
Intimacy
Tips for caring
• If sexually inappropriate behaviour occurs, remain calm and don’t take offence. • Look for reasons behind the inappropriate behaviour. For example the person may be removing their clothes because they want to go to sleep or to the bathroom. • Redirect the person to another activity such as their favourite food or a walk outside. • Take the person to a quiet area and re-attire if necessary. • Find ways to include different forms of touch in the everyday routine so that the person gets some physical contact– massage, holding hands and embracing are ways of continuing to provide loving touch.
The need for closeness is a very important and natural part of people’s lives. People with dementia continue to need caring, safe relationships and touch. Some people with dementia may experience an increased interest in sex, while others may show no interest at all. Sometimes inhibitions are lost and the person with dementia may make advances to others or undress or fondle themselves in public. Basic intimacy needs, however, do not disappear just because the person has dementia.
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Continence
Sleeping
Incontinence can be very distressing for both of you. Make sure that a medical assessment is carried out because there are many causes of incontinence that anyone can develop and which are easily treatable. Common incontinence problems can be associated with constipation, urinary tract infection or diabetes.
Sleeping problems are common for people with dementia. Sleeping habits may change so that they sleep during the day and stay awake at night. Many people need less sleep with advancing age and reduced activities. Tips for caring
• It can be helpful to keep a diary to see if a pattern of behaviour is developing. • Discuss sleeping problems with your doctor. Stopping or changing medications may be contributing to the problem. The doctor can also arrange a medical check-up to identify and treat any physical ailments, or any side-effects of medications. • Depression can cause problems with sleeping. Ask your doctor if an assessment is necessary. • Have regular, set times for bed. • Make sure that the bedroom is comfortable – warm and adequately lit, and that the person is able to find the toilet at night. Consider using a night light. • Cut down on alcohol and caffeine. • Try a light snack, herbal tea or warm milk before bed.
Tips for caring
• Be sure that the person is drinking adequate fluids (5-8 glasses daily – jelly, ice cream or custard may be substituted). • Consider limiting caffeine intake. Substitute other liquids or decaffeinated drinks. • Encourage using the toilet before and after meals, before bed and on awakening. • Use clothes that can be easily manipulated such as elastic waist on trousers and loose fitting dresses and undergarments. • Place signs leading to the toilet and fix a picture on the toilet door as a further cue. • Make sure that there is good night lighting so that the toilet can be found easily. • Absorbent pads, absorbent sheets and waterproof underlays on chairs and the bed will help to reduce laundry. Incontinence pads are available through the Department of Veterans’ Affairs Rehabilitation Appliances Program (RAP). 10
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Wandering
Behaviour changes
Wandering is quite common amongst people with dementia and can be very worrying for carers concerned about their safety and well being.
Behaviour changes can occur when a person has dementia. Coping with these can be very difficult. Always remember that the behaviour is not deliberate. It is part of the illness. The behaviour is out of the person’s control and they may be quite frightened by it.
People may wander for a number of reasons. They may feel disoriented in a new environment or they may just forget where they were going or why. Wandering can also be a way of using up excess energy or occur as a result of boredom or of being upset.
Aggression This can include physical aggression, such as hitting out, as well as verbal aggression, such as excessive swearing.
Tips for caring
• It can help to look for a reason for the wandering. • Talk to your doctor about whether any illness or pain, or the side-effects of medication is triggering wandering. • Increased exercise, such as walking, may help. • Make sure that some form of identification is carried in case the person becomes lost. An identity bracelet with name, address and telephone number or a Medic Alert bracelet is useful. It may be helpful to sew a nametag into garments the person wears regularly. • You may want to consider taking some precautions such as installing bells and buzzers that sound when external doors are opened, locking gates and making the garden a safe place. Relocate the doorlocks where the person will not think to look for them.
Tips for caring
• Exercise may help reduce some outbursts. • Try to anticipate the person’s needs to avoid frustration. • Always explain what you are going to do in case they feel threatened by your behaviour. • A familiar routine, and a calm environment can help avoid some difficult behaviours. • If behaviour becomes difficult, it is usually best not to make physical contact. It may be better to leave them alone. • Speak in a calm, reassuring voice. Don’t be drawn into an argument. • Try not to raise your voice. • Don’t punish the behaviour.
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Hallucinations
Depression
Hallucinations are sensory experiences that cannot be verified by anyone else. Typically the person sees or hears something that is not there. This can be very frightening.
Paranoia
Depression is a feeling of extreme sadness and is very common among people with dementia. Some of the typical signs of depression are a loss of interest in activities that were previously enjoyed, lack of energy, poor sleep and feeling worthless and sad.
Paranoia is characterised by unrealistic beliefs, usually of either persecution or grandeur. Sometimes the person may become very suspicious, accusing others of stealing or hiding their belongings, or accusing their partner of being unfaithful.
It can be difficult to tell the difference between dementia and depression, as many of the symptoms are alike. However, as significant improvements can be made by treating depression, it is very important that it is investigated and treated if suspected.
Delusions
Tips for caring
• Discuss the symptoms with your doctor. • Medication such as anti-depressants may be prescribed. These can be very helpful, but can have side effects for people with dementia. These should be discussed with your doctor before treatment commences. • Be realistic about what the person can do. • Try to keep to a daily routine. • Limit the amount of noise and activity in the environment – this may help avoid overstimulation. • Be positive – frequent praise will help both of you feel better.
Delusions are ideas which are not based on reality, but which are thought to be true by the person with dementia. Common delusions include ideas that people are stealing from them, or are intending to harm them. Tips for caring
• Arrange for a medical check-up to see if there are any physical or psychiatric causes of the behaviour. Ask your doctor to check on the effects of any medications. • Do not argue – reassure them instead. • Try other activities that may be distracting. • Try to maintain a familiar environment, including consistent routines and, if possible, familiar caregivers. 10
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Veterans’ Home Care
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War widows/widowers and veterans of the Australian defence forces who have a Gold or White Card will be eligible to be assessed for services available through Veterans’ Home Care. Services available include domestic assistance, personal care, garden and home maintenance, delivered meals, community transport and respite care.
Where to get help
Department of Veterans’ Affairs Veterans’ Affairs Network The Veterans’ Affairs Network (VAN) is an information service set up by DVA to promote the independence and well being of members of the veteran community in their local environment. VAN’s role is to:
Contact Veterans’ Home Care on 1300 550 450.
• answer questions and provide information about DVA pensions and allowances, and about health care eligibility. • provide up-to-date information and advice on the health and support services available through DVA and the community. • work with local service providers to ensure that veterans and war widows/widowers have access to appropriate services. • work with community agencies to develop programs to meet the needs of veterans, war widows/widowers and their dependants.
Partners, carers and Commonwealth and Allied veterans are eligible for respite care through Veterans’ Home Care, although they are not eligible to be assessed to receive other Veterans’ Home Care services. These groups are still eligible to be assessed to receive similar services under the HACC program. For HACC phone numbers, refer to the ‘Age Page’ in the front of your White Pages telephone directory.
HomeFront HomeFront is a falls and accident prevention program aimed at assisting veterans and war widows/widowers to keep living independently in their own homes. All DVA Gold and White Card holders are eligible for an annual free home assessment to identify hazards in and around the home. Following the assessment, some financial assistance will be provided towards any recommended items or home modifications.
A contact list for all DVA State offices and VAN offices is included on page 28, or you can call 1300 55 1918. Back to Basics: Handy Hints for Carers to Help Prevent Injury This book provides sound advice for carers on such safety issues as, lifting and transferring and the safe and correct use of equipment. Many photographs and practical hints are included to demonstrate these techniques.
Contact HomeFront on 1800 80 1945.
Veterans’ Home Maintenance Helpline The Veterans’ Home Maintenance Helpline is a telephone advice and referral service to assist with property
Contact your local VAN office for a copy.
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Independent Living Centres
maintenance advice and referral to reliable, efficient tradespeople. This service is available to all veterans and war widows/widowers, not just those with Gold and White Cards. Where possible, the Helpline will link you with Government subsidised services.
The Independent Living Centres in each State and Territory offer a number of services designed to promote safe living. Information is available on a number of products including smoke detectors, hot water services temperature regulators and monitoring services. Advice is also available on home modifications and home design.
Contact the Veterans’ Home Maintenance Helpline on 1800 80 1945.
Allied Health Services
Contact numbers for Independent Living Centres can be obtained from the phone book, or by calling the Dementia Helpline on 1800 639 331.
A range of allied health services is available to entitled veterans and war widows/widowers under DVA arrangements. These include services from community nurses, physiotherapists, chiropractors, osteopaths, podiatrists, speech pathologists, social workers, optometrists and dietitians. Access to these services is based on clinical need and, with the exception of optometrical services and supplies, requires referral from a Local Medical Officer (LMO), medical specialist, treating doctor in hospital or hospital discharge planner. Prior approval is required for some services.
Aged Care Assessment Teams (ACAT) Aged Care Assessment Teams (ACAT) can help you work out what kind of care will best suit your needs when extra assistance is needed. Your doctor can refer you to your closest ACAT, or you can find them by contacting the Dementia Helpline on 1800 639 331.
Alzheimer’s Association Each State and Territory has an Alzheimer’s Association which can provide further information, counselling and support for people with dementia, their families and carers. The Alzheimer’s Association has a number of Help Sheets written for carers about caring for someone with dementia. These are available free of charge to people with dementia, families and carers.
Contact the DVA Allied Health Section in your nearest State office or your LMO for more details.
Dental Care Entitled veterans and war widows/widowers are eligible for the majority of dental services through the Local Dental Officer (LDO) scheme. Lists of registered LDOs are available from DVA.
Contact the Dementia Helpline on 1800 639 331.
Contact the DVA Allied Health Section in your nearest State office.
Carer Resource Centres Practical advice and information is available for people with incontinence and their carers from the Continence Foundation of Australia.
Carer Resource Centres are a part of the Carers Association in each State and Territory and provide carers with referral to services and practical written information to support them in their caring role.
Contact the National Continence Helpline on 1800 330 066.
Carers can call their local Carer Resource Centre on 1800 242 636 (freecall).
Continence Advice
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RESIDENTIAL CARE
‘‘
I had chosen for my mother to share a two-bed room, believing that the loss of privacy and independence would be outweighed by the stimulation from having company. This made the atmosphere more like a hospital than a home, but the company from my mother’s room-mate and her extensive family were a boon and a blessing for both of us. When I was unable to visit, I knew that she would not be alone, and when I was there I had others to talk to. On Sunday afternoons when there were no organised activities, I would take my picnic thermos and some cakes and we would share our afternoon tea with whoever of the residents was present in the lounge. Over the next four years there were to be many sad moments as my mother’s powers of speech, mobility and, ultimately, recognition faded. No-one could tell me in advance what to expect because the progressive loss of capabilities is different for each person. For Mum, it seemed to happen in stages, with plateaux of long or short duration in between. Sunday afternoon drives became Sunday afternoon walks in the garden, and in turn became Sunday afternoons by her bedside.
’’
As the dementia progresses, caring usually becomes more intensive and the demands on carers increase. The health of the person with dementia and the well-being of the carer often mean that full-time residential care needs to be considered.
Types of residential facilities
Residential facilities are classified as offering either low level or high level care. Low level care, formerly known as hostel care, provides assistance with some daily living activities such as eating, dressing, bathing, medication and some nursing.
Many carers and families find this a difficult decision to make. Some preparation and planning may help to make the transition easier.
High level care, formerly known as nursing home care, provides 24 hour nursing care. Some residential facilities provide both low and high level care so that people can stay in the same facility even when the level of care they need changes.
Finding out about residential care Assessment
Dementia specific facilities These facilities generally have staff who are specially trained, and physical environments that have been specifically designed to meet the needs of people with dementia.
An assessment and approval for residential care from an Aged Care Assessment Team (ACAT) is required before the search for residential care can begin. The ACAT will help to assess the level of care the person with dementia will need, and provide information about appropriate facilities.
They may provide low or high level care. There are a limited number of dementia specific facilities, especially in rural areas.
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Choosing a residential facility
Adjusting to the move
The ACAT will probably suggest you look at a number of facilities. Take time to consider how each one will meet the needs of the person you are caring for. Take a checklist of questions and a friend or relative with you when you visit each facility. Most residential care facilities have waiting lists and how long you will need to wait for a vacancy varies from facility to facility.
The time after the move into residential care can be very emotional for both of you. People with dementia can find change very difficult. But over time, and with careful planning and sensitive handling of the move, they will adjust. Carers may also have to deal with mixed feelings as a result of the move. You may feel relieved, or guilty, or just sad. Your daily activities will have suddenly changed. Remember that you don’t stop caring because you no longer do the physical tasks of caring. You will find your own level of comfort about your level of involvement in your relative’s care. There is no rule to say how much you must be involved. It is your choice.
What will it cost?
Residential care facilities should be able to provide you with information about the range of fees and charges. The costs of aged residential care can be complex, so it is important to gather as much information as you can.
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*
Department of Veterans’ Affairs
Department of Health and Aged Care
Veterans’ Affairs Network
Where to get help
The Veterans’ Affairs Network (VAN) is an information service set up by DVA to promote the independence and well being of members of the veteran community in their local environment. VAN’s role is to:
This department has primary responsibility for the Commonwealth Aged Care Program, including residential aged care and home and community care. To assist people access appropriate aged care services the department has established a national Aged Care Information Line.
• answer questions and provide. information about DVA pensions and allowances, and about health care eligibility. • provide up-to-date information and advice on the health and support services available through DVA and the community. • work with local service providers to ensure that veterans and war widows/widowers have access to appropriate services. • work with community agencies to develop programs to meet the needs of veterans, war widows/widowers and their dependants.
Aged Care Information Line The Aged Care Information Line can provide information about any aspect of aged care, including residential care. Contact the Aged Care Information Line on 1800 500 853.
Aged Care Assessment Teams (ACAT) Your doctor can refer you to your closest ACAT, or you can find them by contacting the Dementia Helpline on 1800 639 331.
A contact list for all DVA State offices and VAN offices is included on page 28, or you can call 1300 55 1918.
Alzheimer’s Association Each State and Territory has an Alzheimer’s Association which can provide further information, counselling and support for people with dementia and their families and carers. The Alzheimer’s Association has a number of Help Sheets about residential care for people with dementia. These are available free of charge to carers.
Residential Aged Care Fact Sheet While veterans access residential aged care in the same way as the general population, there are some special provisions made to assist ex-POWs and some disability pension recipients. Contact your local VAN office for more information.
Contact the Dementia Helpline on 1800 639 331.
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information about pensions, services and benefits, health, personal finances and lifestyle issues, and your rights and obligations. The guide is also available on audio cassette for people who have difficulty reading standard print. The guide is available from your local VAN office or by calling 1300 55 1918.
Useful Publications There are many books, information sheets and kits available for people with dementia, their carers and families. Some of these are listed below: Publications that are free of charge:
❏
Alzheimer’s Association Help Sheets: The Alzheimer’s Association produces a large number of Help Sheets on a variety of dementia related topics. These include Help Sheets written especially for people with dementia, as well as Help Sheets for families and carers. Help sheets are free of charge to people with dementia, their families and carers and can be obtained by calling the Dementia Helpline on 1800 639 331. Help Sheets can also be obtained on the Internet at www.alzheimers.org.au
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DVA Fact Sheets: DVA has fact sheets available on over 300 topics of relevance to veterans, war widows/widowers, their dependants, families and carers. These fact sheets are available by calling your local VAN office on 1300 55 1918 and are on the Internet at www.dva.gov.au
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Planning Ahead: A guide to putting your affairs in order: This kit is an excellent guide to preparing for, and coping with, bereavement. It can help you and your family to get your affairs in order and to keep all your personal papers up-to-date in a safe place. The kit includes personal information sheets and checklists which ensure that all relevant information is available when you need it, and a booklet that lists the services that are available to help you, your family and friends. The kit is available from your local VAN office or by calling 1300 55 1918.
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You and Your Pension: A guide for service pensioners and for war widows and widowers who receive the income support supplement: This guide contains 10
26
❏
The Carer Experience: Information and Advice for Carers of People with Dementia. This book contains information that carers may need, and ideas they could use. The book is available from the Commonwealth Department of Health and Aged Care, or by contacting your local Carer Resource Centre on 1800 242 636, or the Dementia Helpline on 1800 639 331.
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At Home with Dementia: This publication presents a range of possible solutions to problems commonly faced by people with dementia living at home. NSW residents can obtain a copy by contacting the Ageing and Disability Department on (02) 9367 6811. For residents in other States and Territories the book can be obtained on the Internet at www.add.nsw.gov.au
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Living With Memory Loss: This is an easy to read book written especially for people with dementia. You can get a copy by calling the Dementia Helpline on 1800 639 331.
❏
Back to Basics: Handy Hints for Carers to Help Prevent Injury: This book provides sound advice for carers on such safety issues as lifting and transferring, and the safe and correct use of equipment. To assist in demonstrating these techniques, this book includes many photographs and practical hints, which should ensure that both the veteran and the carer are able to function effectively and safely. The book is available from your local VAN office or by calling 1300 55 1918.
Books
A number of books are available that have been written by people with dementia who share their experiences with the disease. Three of these are:
Contact the Dementia Helpline on 1800 639 331 for advice about how to obtain any of these books.
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The 36 Hour Day, by Nancy Mace and Peter Rabins: A family guide to caring for a person with dementia. It covers all aspects of dementia; assessment, coping strategies, legal issues, residential options, carer health, children and teenagers and research.
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Understanding Difficult Behaviour: Some Practical Suggestions for Coping with Alzheimer’s disease and Related Illnesses, by Anne Robinson, Beth Spencer and Laurie White: A very helpful book of suggestions for dealing with difficult behaviour and their possible causes. It also gives advice on successful communication with people with dementia.
❏
Take me home: Families living with Alzheimer’s, by Amanda Hampson: This recently published book looks at the family experience of Alzheimer’s disease. It includes personal accounts of partners, children and grandchildren of people with Alzheimer’s disease as well as extensive information about risk factors, research and treatments.
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Dementia with Dignity: A Handbook for Carers, by Barbara Sherman, an Australian author who has been a dementia carer herself. Written in a very readable style, the book explains dementia and its progressive effect. It also has suggestions for dealing with behavioural problems and for residential placement and beyond.
❏
A Funny Thing Happened on the Way to the Nursing Home, by Jim Connor: A true and touching account of a man caring for his wife who has dementia. The story contains pathos, humour and hope. 27
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Who Will I Be When I Die?, by Christine Boden: Christine Boden was diagnosed with Alzheimer's disease at 46 and rediagnosed with frontal lobe dementia when she was 49. This is the first book written by an Australian with the disease and offers a unique insight into her battle with dementia.
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Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimers, by Diana Friel McGowan: This autobiographical book tells of the author's struggle with the effects of Alzheimer’s disease and offers the reader insight into the world of dementia.
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Show Me the Way to Go Home, by Larry Rose: Larry Rose records his experiences with Alzheimer’s disease with humour and unquenchable spirit.
USEFUL CONTACTS DEPARTMENT OF VETERANS’ AFFAIRS
VAN Offices Tasmania:
To contact the Department of Veterans’ Affairs:
Montpelier Building 21 Kirksway Place Battery Point Tasmania 7004 (03) 6221 6628
✆ 133 254 ✆ 1800 555 254 (callers from regional Australia)
Retirement Service Centre 54 Cameron Street Launceston Tasmania 7250 (03) 6331 3364
Veterans’ Affairs Network:
✆ 1300 55 1918
(freecall to your local VAN office)
Western Australia:
New South Wales State Office:
Tower B, Centennial Plaza 280 Elizabeth Street Surry Hills New South Wales 2010 (02) 9213 7777
12th Floor, AMP Building 140 St Georges Terrace Cnr William Street Perth Western Australia 6000 (08) 9366 8444
Victoria State Office:
Northern Territory:
Suite 8, CASCOM Centre 15 Scaturchio Street Casuarina Northern Territory 0810 1300 55 1918
300 La Trobe Street Melbourne Victoria 3000 (03) 9284 6000 Queensland State Office:
South Australia:
AMP Place 10 Eagle Street Brisbane Queensland 4000 (07) 3223 8333
Blackburn House 199 Grenfell Street Adelaide South Australia 5000 (08) 8290 0555
South Australia State Office:
Blackburn House 199 Grenfell Street Adelaide South Australia 5000 1800 113 304
Contracted Service Site 5 Percy Street Mt Gambier South Australia 5290 (08) 8725 9811
Western Australia State Office:
Queensland:
Brisbane AMP Place 10 Eagle Street Brisbane Queensland 4000 (07) 3223 8475
AMP Building 140 St Georges Terrace Cnr William Street Perth Western Australia 6000 (08) 9366 8222 Tasmania State Office:
Montpelier Building 21 Kirksway Place Battery Point Tasmania 7004 (03) 6221 6666 10
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Cairns
Roma
104 Grafton Street Cairns Queensland 4870 (07) 4052 1126
Centrelink 39 Hawthorne Street Roma Queensland 4455 (07) 4622 8929
Gold Coast
National Mutual Plaza 12 Short Street Southport Queensland 4215 (07) 5630 0203
Thursday Island
Centrelink Commonwealth Centre Cnr Hastings Street and Victoria Parade Thursday Island Queensland 4875 (07) 4090 2120
Toowoomba
Sullivan and Nicholaides Building 99 Russell Street Toowoomba Queensland 4350 (07) 4638 1555
Emerald
Emerald and District Social Development Assoc. Inc. “At the Neighbour Centre” 17 Yamala Street Emerald Queensland 4720 (07) 4982 3153
Townsville
River Quays 7 Tomlin Street South Townsville Queensland 4810 (07) 4722 3333
Victoria Melbourne
300 La Trobe Street Melbourne Victoria 3000 (03) 9284 6000
Sunshine Coast
Ground Floor, 17 Carnaby Street Maroochydore Queensland 4558 (07) 5479 5112
Bairnsdale
49 McCulloch Street Bairnsdale Victoria 3875 (03) 5153 1120
Contracted Service Sites Queensland
Ballarat Gladstone
12 Dawson Street South Ballarat Victoria 3350 (03) 5331 3844
Centrelink 160-164 Goondoon Street Gladstone Queensland 4680 (07) 4972 0424
Bendigo
Bendigo Health Care Group 100 Barnard Street Bendigo Victoria 3552 (03) 5444 6357
Mackay
Centrelink Cnr Victoria and Gregory Streets Mackay Queensland4740 (07) 4967 1818
Camberwell
1 Railway Pde Camberwell Victoria 3124 (03) 9963 1051
Rockhampton
Centrelink 190-194 Musgrove Street North Rockhampton Queensland 4701 (07) 4938 5406
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Frankston
Lismore
Suite 2, Level 1 54-58 Wells Street Frankston Victoria 3199 (03) 9783 7312
Office 6, Level 1 Conway Court Cnr Molesworth and Conway Streets Lismore New South Wales 2480 (02) 6622 4481
Geelong
Newcastle
200 Malop Street Geelong Victoria 3220 (03) 5221 8963
Ground Floor, 6 Auckland Street Newcastle New South Wales 2300 (02) 4926 2733
Mildura
Parramatta
C/- Aged and Disability Services 76-84 Deakin Avenue Mildura Victoria 3502 (03) 5021 2637
Shop 3, The Octagon Centre 99 Phillip Street Parramatta New South Wales 2150 (02) 9893 9892
Morwell
Wollongong
11 Hazelwood Road Morwell Victoria 3840 (03) 5133 0177
Commonwealth Offices Level 4, 43 Burelli Street Wollongong New South Wales 2500 (02) 4226 0190
Warrnambool
Level 1, 145 Lava Street Warrnambool Victoria 3280 (03) 5562 9900
Retirement Service Centre
60 Archer Street Chatswood New South Wales 2067 (02) 9448 3902
Wodonga
81 Hume Street Wodonga Victoria 3690 (02) 6056 4321
Contracted Service Sites New South Wales
Retirement Service Centre 1 Railway Parade Camberwell Victoria 3124 (03) 9963 1045
Bega
Centrelink 49 Church Street Bega New South Wales 2550 (02) 6492 5809
New South Wales Sydney
1st Floor, Tower B Centennial Plaza 280 Elizabeth Street Surry Hills New South Wales 2010 (02) 9213 7900
Coffs Harbour
Gosford
Dubbo
Suite 1, 250 Mann Street Gosford New South Wales 2250 (02) 4323 4945
Centrelink Cnr Wingewarra and Macquarie Streets Dubbo New South Wales 2830 (02) 6881 6719
Centrelink 21-25 Duke Street Coffs Harbour New South Wales 2450 (02) 6650 9029
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Vietnam Veterans Counselling Service
Orange
Centrelink Commonwealth Government Centre Cnr Kite and Lords Place Orange New South Wales 2800 (02) 6361 1188
New South Wales Sydney/Parramatta
Ground Floor 88 Phillip Street Parramatta New South Wales 2150 (02) 9635 9733 1800 043 503 (freecall 24 hours)
Port Macquarie
Centrelink 5-7 Short Street Port Macquarie New South Wales 2444 (02) 6583 8273
Albury/Wodonga
81 Hume Street Wodonga Victoria 3690 (02) 6056 1341 1800 011 046 (freecall 24 hours)
Tamworth
Centrelink 17 White Street Tamworth New South Wales 2340 (02) 6761 2547
Lismore
Office 6, Level 1 Conway Court Cnr Molesworth and Conway Streets Lismore New South Wales 2480 (02) 6622 4479 1800 043 503 (freecall 24 hours)
Wagga Wagga
Centrelink 63 Tompson Street, Cnr Peter & Tompson Streets Wagga Wagga New South Wales 2650 (02) 6925 8061
Newcastle
4–6 Auckland Street Newcastle New South Wales 2300 (02) 4925 2351 1800 043 503 (freecall 24 hours)
Australian Capital Territory Canberra
10 Moore Street Canberra ACT 2601 (02) 6267 1411
Australian Capital Territory Canberra (and surrounding New South Wales areas) Ground Floor, Suite G03 Fujitsu House 7-9 Moore Street Canberra ACT 2601 (02) 6247 2988 1800 011 046 (freecall 24 hours)
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Victoria
South Australia
Melbourne
Adelaide
290 Burwood Road Hawthorn Victoria 3122 (03) 9818 0388 1800 011 046 (freecall 24 hours)
99 Frome Street Adelaide South Australia 5000 (08) 8290 0300 1800 011 046 (freecall 24 hours)
Albury/Wodonga
Northern Territory
81 Hume Street Wodonga Victoria 3690 (02) 6056 1341 1800 011 046 (freecall 24 hours)
Casuarina
Shop 6, CASCOM Centre Bradshaw Terrace Casuarina Northern Territory 0810 (08) 8927 9411 1800 011 046 (freecall 24 hours)
Queensland Brisbane
GHD House, 15 Astor Terrace Spring Hill Queensland 4004 (07) 3831 6100 1800 011 046 (freecall 24 hours)
Western Australia Perth
Ground Floor 31 Ventnor Avenue West Perth Western Australia 6005 (08) 9481 1955 1800 011 046 (freecall 24 hours)
Maroochydore
Ground Floor, 17 Carnaby Street Maroochydore Queensland 4558 (07) 5479 3992 1800 011 046 (freecall 24 hours)
Tasmania
Gold Coast
Hobart
Regent Plaza 12 Short Street Southport, Queensland 4215 (07) 5591 6332 1800 011 046 (freecall 24 hours)
2 Castray Esplanade Battery Point Tasmania 7004 (03) 6231 0488 1800 011 046 (freecall 24 hours)
Townsville
Launceston
Shop 4-6 Kirwan Plaza, 42 Thuringowa Drive Thuringowa Queensland 4817 (07) 4723 9155 1800 019 332 (freecall 24 hours)
29 Elphin Road Launceston Tasmania 7250 (03) 6331 7500 1800 011 046 (freecall 24 hours)
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