Info for Family & Friends
Information on dementia, for people with dementia and their families to share
What dementia is, how it affects people, and ways to help
What is dementia?
Dementia is the term used to describe the large group of illnesses which cause a progressive decline in a person’s abilities. It is a broad term that describes a loss of memory, intellect, social skills and changed emotional reactions. For a long time, the person may look healthy, but on the inside their brain is not working properly.
Dementia is a degenerative condition, meaning there is ongoing deterioration of brain function. There are many different forms of dementia. Alzheimer’s disease is the best known and most common type, accounting for 50-70% of all cases.
Memory loss
Not everyone with dementia experiences memory loss, but it is one of the main symptoms of to time, but the loss of memory with dementia is different; it is persistent and progressive, not just occasional. It may affect the ability to continue to work, and to carry out familiar tasks, even finding the way home. Eventually it may mean forgetting how to dress or bathe, or failure to recognise family and friends.
An example of normal forgetfulness is walking into the kitchen and forgetting what you went there for, or misplacing your car keys. Usually, people will remember why they went into the kitchen if they go back to where they came from. The car keys can be found by thinking back over recent movements. However, a person with dementia cannot do this; the main difference is that the person with dementia is unable to recall what they have forgotten or even that they have forgotten.
Who gets dementia?
Dementia can happen to anyone, but as people get older, the chances of developing dementia are higher. For people aged 70 to 74, approximately 1 person in 30 has dementia, while for people aged 90 to 94 it is 1 person in 3. Rarely, it can affect people in their 30’s, 40’s and 50’s.
Can dementia be inherited?
This depends on the cause of the dementia. About a third of people with Alzheimer’s disease have a close relative (parent, brother or sister) who has, or has had, dementia. However in many cases there is no family history.
How does dementia progress?
The situation of every person with dementia is unique. Their abilities may change from day to day. What is certain though, is that the person’s abilities will deteriorate slowly or, occasionally rapidly, over a number of years.
Is there a cure for dementia?
At present there is no cure for most forms of dementia. However, some medications and alternative treatments have been found to relieve some of the symptoms for some people for a period of time.
How does dementia affect people?
Initially there may be only slight changes in personality or behaviour. The person with dementia may become less motivated to do the things that previously interested them, or reluctant to part from familiar surroundings or routines. They may have difficulty finding the right words or repeat themselves.
As the illness advances, the changes become more marked. Concentration, understanding and the ability to reason and respond may deteriorate. People with dementia may experience confusion, distress, mood changes and aggression as they struggle with the frustrations of everyday life.
The importance of family and friends
Family and friends play an important part in the lives of people with dementia. They provide valuable links to past experiences, and enable him / her to continue to be a loved and valued member of a family and circle of friends.
Family and friends can also provide support to the main carer of a person with dementia. Providing care for someone with dementia can be very stressful; many studies show high rates of depression, anxiety and physical illness in families where someone has dementia. This is particularly relevant for Chinese people who often care for a family member with dementia because of cultural expectation, not accessing support services due to the stigma of dementia, or difficulty in accessing support services due to language barrier.
Unfortunately, some friends may stay away from the person and their family after dementia is diagnosed. Some are frightened or embarrassed by dementia; others are afraid of saying or doing the wrong thing. This avoidance is distressing for the person with dementia, the family feels abandoned and both are at risk of becoming socially isolated.
How can you help?
Family and friends can support people affected by dementia in a variety of ways:
Learning about dementia is always a good starting point.
Understand that while outwardly the person may look fine, they have a condition of the brain that is deteriorating and this may cause the person to act irrationally at times.
Encourage and help family and carers to have a break, or a change of scenery.
Be available for a chat from time to time.
Bring a meal, or help with gardening or shopping.
Support the person with dementia to do the kinds of things that they enjoyed before dementia was diagnosed, such as outings to the local shops, Chinese restaurants like yum chai, tai chi classes in local parks, church, walks or drives in the country.
Remember that many people with dementia are confused by crowds or noisy environments. Activities may need to be adapted, but it is important to keep doing them for as long as they still give pleasure.
Enjoyment does not require memory. The pleasant feelings generated by the experience linger long after an outing is forgotten, so enjoyable activities are still worthwhile even if the person forgets them quickly.
Ask about specific ways that you can help. Be aware though, that many people are reluctant to admit that they need help until they become desperate.
Communicating
Losing the ability to communicate can be one of the most frustrating problems for people with dementia, and adds to the difficulty of maintaining friendships.
Remember that people with dementia retain their feelings and emotions even though they may not understand what is being said, so it is important to always maintain their dignity and self-esteem. Use touch to keep the person’s attention and to communicate feelings of worth and affection.
Talk in a gentle, matter-of-fact way and keep sentences short, focusing on one idea at a time. Allow plenty of time for what you have said to be understood by pausing longer than usual when waiting for an answer. Silence can give time to think and respond.
Where appropriate, use body language to demonstrate and reinforce your verbal message e.g. wave when saying goodbye. Don’t forget that only 7% of communication is by words; the rest is through body language, facial expression and tone of voice.
Remember
The best way of all to help someone with dementia is to stay interested, stay in touch and let them know that they are loved.