Dementia is the term used to describe the symptoms of a large group of illnesses, which cause a progressive decline in a person's mental functioning. It is a broad term, which describes a loss of memory, intellect, rationality, social skills and normal emotional reactions. There are several illnesses that gradually result in dementia the most common is Alzheimer’s disease, which accounts for 70% of all dementia cases.

• Forgetting things more often and not remembering them later.

• Forgetting or jumbling words and thus not making sense.

• Disorientation – forgetting where one lives or where one is (even in your own street)

• Wearing odd combinations of clothes - loss of judgement

• Abstract thinking problems – e.g. forgetting all about numbers

• Misplacing things – hiding things or putting them in odd places.

• Mood swings – rapid changes for no apparent reason.

• Change in personality – becoming fearful or depressed, sad or angry.

• Not being able to learn new information.

• Repeating the same story over again or asking the same questions.

Dementia is widespread and can affect younger people; currently over 9,600 Australians under the age of 65 have early onset dementia. Up to 100 different diseases may cause dementia, and there are many other diseases that may have symptoms similar to dementia. Thus, if you or a loved one have symptoms that are similar to dementia, it is important to be examined properly.

Dementia has been called 'the relatives' disease' because the illness usually affects the entire family and social circle. First and foremost because the person with dementia will have problems with remembering people, places and events, learning, sense of direction, and later on with language functions and planning daily activities. "These are called ‘cognitive functions’.

The disease often progresses slowly and spouses are affected the most, but other family members and friends are affected as well. It is often a long-term illness, which causes a great deal of stress, and illness in the person or people who take on the carer role for the demented person. Therefore, it is important to learn to take care of yourself and be aware of stress-related burdens, physical and psychological.

Carers will have to take on increasing numbers of tasks that the sufferer attended to previously. This increases the workload for spouses and close relatives. Soon you may be providing practical help such as with personal hygiene and structuring everyday life for the person who has dementia. You may find you become their "memory". This can be a physical and psychological burden for the carer.

Getting help early

The earlier help is found the better the family and person with the condition will be able to manage and cope. It is important to:

Plan ahead – while the person can still legally sign documents, get enduring powers of attorney to manage financial affairs and medical decisions, and for guardianship. Think about in-home support services such as live-in companion-housekeepers should they prefer to stay at home. Read our article called “There’s no place like home”. There is also the possibility of residential care longer term.

Obtain information – find out about dementia and what lies ahead. Being informed will give you more sense of control as sometimes the spiral into dementia can be sudden and unexpected.

Seek support – many people find it helpful to talk through what a diagnosis of dementia means and how they can make adjustments. Your family doctor is a good place to start and we have listed a whole range of services below.

Realistic help – organise help in the home, respite care, day trips and stays at day centres, which can all make a positive difference. Initially support may be required for housekeeping and cleaning chores but as the illness progresses you will need help with personal care as well as qualified in-home nursing should they choose to stay in the home. Read our article called “Arranging for in-home care”.

Support services

There is a wide range of community services to help both the person with dementia and their carers. These include:

Aged Care Assessment Services – contact your regional Department of Health and Aging as it differs by state

Aged Care Information Line Tel. 1800 500 853

Alzheimer’s Australia National Dementia Helpline A 24 hour telephone information and support service available across Australia, there is also an interpreter service. Tel. 1800 100 500

Books, videos and other resources

Carer Resource Centres Tel. 1800 242 636

Carer Respite Centres Tel. 1800 059 059

Carer support groups

Cognitive Dementia and Memory Service (CDAMS) - these specialised services provide expert assessment and diagnosis to people with memory loss or changes to their thinking.

Adult Day Centres – local groups providing respite for a day

High and low-level aged care facilities (see our article called Preparing to move into residential care)

Meals on wheels

Your local community health centre

Your local council

Your local doctor

Things to remember

• Dementia is a progressive decline in a person’s functioning.
• There are many causes of dementia – Alzheimer’s disease is just one.
• While dementia is more common in older people, it is not a normal part of ageing.
• Support and respite for carers is critical as the illness may be long.

Danielle Robertson is the CEO of DIAL-AN-ANGEL®. Established in 1967 it is the only national agency specialising in the provision of home and family care. The company provides Visiting Angels® for in-home nursing, eldercare-at-home®, respite care, palliative and convalescent care, as well as child care, housekeeping services, handyman services, in-home entertaining and corporate functions. Phone 1300 721 111.