Living with Dementia

In the early stages, dementia may not be easily noticeable and will not have much effect in the daily life.  Changes can happen slowly, but over the years dementia causes deterioration in the abilities of the person to manage their daily activities.  It will make life easier, if you tell those close to you that you have dementia.

The daily abilities of a person with dementia can vary. For example, the person may be able to remember or do things today that they couldn’t yesterday. They may be more forgetful or argumentative in the afternoon or evening. Concentration, understanding and the ability to reason may deteriorate and the person with dementia may suffer confusion and distress as they struggle with the frustrations of everyday life.

Communication

The ability to communicate through spoken or written language may deteriorate or may be lost. The person then has to use other forms of communication to express a need.  Learned languages may be lost, leaving only the first language skills.

People with dementia may repeat actions and may constantly ask questions or say the same things. Families and carers can find repetitive actions and talk very frustrating. This may be caused by simply forgetting they have just asked a question, anxiety, forgetting the answer, insecurity, and being confused by people, places or events.

Allow plenty of time for communication, don’t rush!  Keep sentences short and simple and try to avoid background noise such as TV or radio.


Safety

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.


Driving

If the doctor determines that dementia is affecting the person’s ability to drive, then the licensing authority can place conditions on their licence.  Talk to your doctor and the licensing authority in your state.


Activities

Most people with dementia will need some assistance to carry out the activities that provide them with pleasure and enjoyment. It is important that activities promote the self-esteem of the person with dementia and maintain the skills that they still have.

What has been important and enjoyable before – listening to music, travelling, fishing with friends, neighbours, family members?  Many people with dementia do not enjoy crowds or noisy environments.   Sensory experiences, such as massage, stroking an animal or brushing hair, can be enjoyable.


Hygiene

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. Try to develop a regular routine, and explain each step, keeping the bathing/showering simple.


Continence

Common incontinence problems can be associated with constipation, urinary tract infection or diabetes. Incontinence can often be treated.

It may help to ensure that the person is drinking enough, but caffeine intake may need to be limited.  Encourage using the toilet before and after meals, before bed and on wakening, and place signs leading to the toilet or paint the door with a different colour to make finding the toilet easier.  Absorbent pads and waterproof underlays will help to reduce laundry.


Nutrition

The person with dementia may suffer from a loss of appetite, forget how to chew or swallow or fail to recognise the food or drink they are given. Some people may develop an insatiable appetite, a craving for sweets or suffer from dry mouth or mouth discomfort.

It may help to stock up on healthy snacks, keep the table setting simple and allow time for the memory to respond to food.  If swallowing difficulties have been diagnosed, a speech therapist may give helpful suggestions.


Sleeping

Sleeping problems are common for people with dementia. Their sleeping habits may change so that they sleep during the day and stay awake at night. Some older people wake during the night to use the toilet, but a person with dementia who is disorientated with the time may not return to bed. Many will need less sleep with advancing age and reduced activities.


Sexuality

Sexual behaviour may be affected by dementia just as many other behaviours are affected. It should be dealt with frankly for the benefit of the person with dementia as well as the family and carer. Discussing the matter with a counsellor can be helpful and is recommended.


Challenging Behaviours

Sometimes a person with dementia may become suspicious, aggressive, have hallucinations, accuse people falsely or over-react. This is most often the trigger for the person to have to go into care.  Try to stay calm and identify the reason for the unusual behaviour and not take the behaviour personally. Try to remember that it is the illness and not the person causing the behaviour.
If the symptoms occur suddenly and there are other signs of mental fluctuation, medical attention is needed, as there may be other causes, such as infections, constipation, dehydration, pain, and medication errors.  These symptoms will settle with proper treatment.

Taking Care of Your Memory

At the present time there is no known way of preventing or curing dementia. Extensive research is being carried out across all aspects of dementia. Although most findings are not yet conclusive, there is evidence that certain lifestyle and health factors may influence the rate at which dementia develops and progresses and the severity of its symptoms. A healthy lifestyle may also be beneficial in non-dementia related memory impairment and is conducive to achieving better overall health and supporting independence in later life.


Keep physically active

Aerobic exercise – take the dog for a walk or go for a swim.

Exercise increases the blood flow to the brain, improves cardiovascular health and may stimulate nerve cell growth.

Some studies have shown reduced risk of dementia of up to 60% associated with regular physical exercise.

Strength training – it is becoming fashionable for older people to attend gym.

A recent study of a 1000 men and women in their eighties showed that among those with the greatest muscle strength there was 62% less dementia.

Maintaining good muscle strength and flexibility will also help prevent falls.


Keep your brain active

If you speak English as a second language, continue to use it.

Go to classes, learn something new, listen to the radio, read, play games and do crossword and jigsaw puzzles, learn to use the computer

Take up new hobbies such as painting scrap booking, craft, woodwork, gardening or anything that interests you.


Maintain good health

Have regular blood pressure and cholesterol checks

Keep diabetes well controlled


Do not smoke

Smoking increases the risk of memory loss and vascular dementia


Eat healthily

Avoid too much saturated fat


Avoid stress

Long term stress can have a detrimental effect on your memory as it affects the part of the brain associated with learning and remembering.


Drink moderately

Continue light to moderate drinking but if you are a non-drinker there is no need to start now.

Excessive alcohol consumption exposes to memory loss and sleep disturbance.


Keep up friendships and family contacts

Social engagement will keep your brain stimulated and you are less likely to become depressed. Depression is associated with increased risk of Alzheimer’s disease. Your immune system will benefit from significant social connections, for instance  you will be less likely to catch the flu.


Engage in social and leisure activities

Go to the movies, restaurants and sporting events

Attend church, a club and community events

Volunteer – there are many worthwhile community programs that use volunteer workers

Help a friend


Sleep well

Sleep disorders can cause memory disturbances and increase the risk of developing dementia. See your doctor if you sleep poorly and are drowsy during the day.


Protect your head

Head injuries have been shown to be a risk factor in the development of Alzheimer’s disease.

Wear a helmet when cycling


Avoid strong electromagnetic radiation

Use shielded electric motors where possible

Where to Get Help?

Information and support…

National Dementia Helpline 1800 100 500 or www.alzheimers.org.au

  •  Alzheimer’s Australia provides information, counselling and support for people with all forms of dementia and their families and carers.

Commonwealth Carer Resource Centre 1800 242 636

  • operated by Carers Associations in each state
  • provides information, practical support and services, such as respite care and home help

Commonwealth Carelink Centre 1800 052 222

  • provides information on local services, such as help at home, personal care, home modifications

Aged and Community Care Information Line 1800 500 853

  • provides information on government funded residential aged care and community care

Dementia Behaviour Management Advisory Service (DBMAS) 1800 699 799

  • assistance available 24/7 for industry workers and family carers in relation to challenging behaviour.

Telephone Interpreter Service (available 24/7) 131 450

  • free interpreting services to non-English speaking Australian citizens or permanent residents communicating with doctors, community organisations, local government authorities etc.

Help with caring

Help is available to support all aspects of caring for someone at home.  You can get help in home nursing services, physiotherapy and other health services, meals at home, transport etc.  Ask you doctor or contact the phone numbers above. Local help is also available from the following numbers;

Brisbane: Home and Community Care 3829 4845  Helen or Anna

Melbourne: Finnish Friendly Visiting Service 03 9315 0601 tai 0412 316 467 Satu or Maarit

Help is also available for the person caring for someone.  Regular breaks are important, and respite care may be able to help by providing someone else to do the caring for a while, whether for a couple of hours or a few days.  Find out more by calling the

Commonwealth Carer Respite Centre on 1800 059 059


Financial assistance


Centrelink

You may be eligible for extra assistance, such as Carer Payment, Carer Allowance, Pharmaceutical Allowance, Rent Assistance, Telephone Allowance, Bereavement Payment to name a few.  Centrelink also runs a free financial information service.  For more information about Centrelink benefits and entitlements phone 13 27 17 or visit www.centrelink.gov.au
Concession Cards

  • Pensioner Concession Card, if you are getting an eligible payment from Centrelink, provides savings on medicines and travel on public transport. Your local government may also give you reductions on rates, power bills, ambulance services and car registrations.
  • Seniors Card, issued by state and territory governments to people over 60, provides a variety of discounts.

Other useful contacts:

Finnish Rest Home Association
343 Cleveland-Redland Bay Road
Thornlands, Qld 4164
Ph: 3829 4800
Useful websites

Alzheimer`s Australia: www.alzheimers.org.au

Finlandia Village: www.afrha.com.au