PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

Dementia is a major health problem in Australia. It has profound consequences for the health and quality of life of people with the condition, as well as for their families and friends.

Because dementia is generally a progressive condition, its impact increases with the growing severity of the condition. Eventually, people with dementia become dependent on their care providers in most, if not all, areas of daily living (unless they die from another condition first). PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

WHAT IS DEMENTIA?

Dementia is not a disease, but rather an umbrella term for a variety of symptoms that may accompany or indicate certain diseases or conditions. Today over 60 different conditions are known to cause dementia symptoms

After a dementia diagnosis, the focus is often only on the person’s symptoms and behaviour rather than on his or her needs. It can seem that there is not much that can be done, which makes it very hard to maintain a positive attitude. However, if you shift your focus and energy to the person’s strengths and remaining abilities, it helps you keep a positive attitude and enables you to encourage and inspire improvement, joy, hope, and well-being in those you support.1

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WHAT IS THE DIFFERENCE BETWEEN DEMENTIA AND ALZHEIMER’S DISEASE?

Dementia is not a disease, but a broad term to cover a group of symptoms; the most common being memory loss. The most common cause of dementia is Alzheimer’s disease, a degenerative disease accounting for between 50 – 70% of all cases. To date, there is no medical cure or preventative for Alzheimer’s. Medical treatments available today can only prolong a stage of dementia for a certain period of time with varying success depending on the product and the individual. It is important to be aware that despite the amazing assessment tools available today, it is still not possible to truly diagnose Alzheimer’s until an autopsy has taken place. Also, in many situations there is no direct link between the person’s neurological changes and the degree of dementia symptoms he or she may experience. PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

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Below are some examples of curable or reversible conditions:

 Dehydration can cause confusion and increased memory loss – both

symptoms of dementia.

 Constipation

 Infection. e.g. pneumonia, urinary tract infection or even the smallest

infection can cause dementia symptoms. PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

 Vitamin imbalance. Imbalance or lack of ‘brain vitamins’ such as C, E, B6,

B12 and folate (folic acid) can also cause dementia symptoms. High

homocysteine, levels are associated with an increased risk of cardiovascular

disease, stroke and also Alzheimer’s disease and other dementias. Adequate

intake of vitamin B and folate can help reduce homocysteine levels.

 Pain – can cause dementia symptoms.

 Medication poisoning. This can occur easily in older people because their

bodies are less able to excrete surplus medication, which can build up in the

system and create side effects, such as bewilderment, confusion and amnesia;

all symptoms of dementia.

 Brain tumors – (that can be removed) benign as well as malignant.

 Depression can also cause symptoms similar to dementia, such as decreased

memory and concentration loss; often leading to misdiagnosis.

Once any of the above existing conditions has been cured, the dementia symptoms are likely to disappear or return to the level they were at before the condition appeared.

Medical research has not yet been able to find any treatment or preventatives for the following conditions:

 Alzheimer’s disease (the most common cause of dementia) is a result of

damage and changes to nerve cells within the brain. These abnormalities are

referred to as amyloid plaques and neurofibrillary tangles which can

ultimately destroy nerve cells. PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

 Vascular dementia or multi-infarct dementia (the second most common

cause of dementia) and more commonly known as stroke, is a result of the

blood supply to the brain being cut off due to clotting or blood vessels

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bursting in the brain, (aneurism) destroying surrounding tissue and

triggering strokes.

 Lewy Bodies dementia (the third most common cause of dementia) is a

result of a build-up of Lewy bodies – accumulated bits of alpha-synuclein

protein – inside the areas of the brain that control particular aspects of

memory and motor control. The dementia symptoms are characterised by

pronounced fluctuations in the mood with periods of confusion, followed by

greater lucidity, and disturbed visual experiences. PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

 Excessive alcohol intake or Korsakov Syndrome is associated with

prolonged alcohol use characterised by personality changes and short-term

memory loss.

 Fronto Temporal Lobar Degeneration (FLTD) including Pick’s disease is

caused by a degeneration occurring in one or both of the frontal and temporal

lobes of the brain resulting in significant behaviour and personality changes.

 Other less common causes of dementia include Huntingdon’s and

Parkinson’s diseases.2

EARLY SIGNS OF DEMENTIA

The first signs and changes in a person with dementia may be scarcely noticeable as most often they come on gradually. (Except in cases like multi-infarct dementia, which takes a more step-like decline?) The person or family may initially only notice memory lapses, such as difficulty in remembering dates or finding the right word. The person may use impaired judgement resulting in financial or ill-considered decisions. Behaviour and personality changes may occur too, such as becoming more assertive/more withdrawn, less flexible; showing a loss of interest in things that have mattered previously, becoming absent-minded or repeating the same story or question. PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

Each person will be affected in his or her own unique way, and also dependent on the type or cause of his or her dementia. It is important to avoid foretelling the future or embracing all the pessimistic possibilities you may hear or read of because such negative predictions may well result in a self-fulfilling prophecy.

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The fact that some brain cells die or that there has been a deterioration of brain cells resulting in the onset of dementia does not mean the path ahead has to be all downhill. Some research studies show that there is no correlation between the severity of brain damage and the extent to which a person is generally affected by the dementia process.

Research into the brain also shows that even though some brain cells may die, the brain has the capability to repair itself, creating new networks and pathways to link information stored in cells that are still functioning. There is much excitement in the scientific world about the possibility of nerve regrowth in the brains of people with dementia.

We know through experience that people with dementia have a fabulous ability to develop new strategies and behaviours to compensate for what they have lost. Positive responses to and interpretations of these changes, strategies and behaviours can be a matter of attitude, both in the person and those of their supportive partners or “carers”. PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

Often, after a dementia diagnosis, focus fixes only on the person’s symptoms and behaviour rather than on his or her needs. With this daunting diagnosis, it can seem that there is not much that can be done and it can be very hard to maintain a positive attitude. However, if we shift our focus and energy to the person’s strengths and remaining abilities, it will help us to keep a positive attitude and influence both the way we care and how the person we support will feel and respond to us.

The first step is to switch our thinking from – dementia as resulting from an irreversible, degenerative disease of the brain without a cure. (A very negative picture); to – dementia resulting from a disability of certain parts of the brain. We need to remember that the rest of the person is still alive, feeling, sensitive and responsive. There are many possibilities to work with to help the individual improve, blossom and grow. By focusing on all that the person can still do, we can help ensure meaningful, positive and fulfilling lives for those we support.

When we open up to possibilities instead of the forecast probabilities, a whole new dimension can develop in relationships between either you and the person who supports you or you and the person you support.3

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SYMPTOMS AND STAGES OF DEMENTIA

Dementia symptoms are often grouped in ‘stages’ – here we refer to 4 different stages. These stages should only serve as guides though, as each person responds differently to their particular symptoms, and stages can fluctuate and overlap. A person may show symptoms common to the early stage one minute and those common to the middle or late stage the next. These variations can be very much dependent on whether the person is experiencing an underlying physical condition or the lack of genuine respect and appreciation.

Though a person may appear muddled one particular day – or in the morning or afternoon – this doesn’t mean that the person is ‘locked’ at that point or has moved on to the next stage. It only means that this is where he or she is at that particular moment, and this may change, and the person may revert to being quite clear again.

The definitions we use here for the 4 stages are expressed from the point of view of social psychology; and are different from those of the medical model, which focuses mainly on the deterioration occurring in the brain. (Note: Research has shown that there is little correlation between the severity of brain damage and how it actually affects a person with dementia.) PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

We can all be forgetful at times. Who hasn’t gone to another room and arrived to wonder what they were doing there? Who hasn’t forgotten what day it is momentarily, especially when on holidays? Who hasn’t misplaced their car keys on occasions? The difference for the person with dementia is that he or she may find the keys but not know what to do with them.

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FIRST-STAGE

In the first stage, people with dementia begin to experience that something is not right – ‘The old memory is playing up.’ They may feel embarrassed or frightened when they recognize changes in their memory or thinking. Family and friends begin to question and comment on the changes and forgetfulness. The person is likely to fight to keep up the façade of ‘normality’ and being in control.

They might do things, such as making up a little story to fill the memory gap of someone or something they can’t remember. Professionals label this gap filling as ‘confabulation’. However, this ‘story’ telling or gap filling does not mean that the person is telling a lie. It is actually a creative, self-defense mechanism that helps the person to keep up the

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façade. It will help supportive partners and ‘carers’ to understand if they can imagine it in this way too.

The person may express anger or annoyance to direct questions requiring memory or thinking skills. A seemingly simple question, such as: ‘Where were you born?’ may elicit a snappy, ‘That’s none of your business!’

Also, the person might blame others for his or her memory lapses.

 Lydia cannot find her glasses. She asks her husband, Eric, ‘Have you seen my

glasses?’ Eric recalls seeing them earlier in the bedroom, and says, ‘Have a

look on the bedside table. I think you put them there.’ Lydia is not going to

admit that she might have put the glasses there herself and forgotten; so she

says, ‘Well, you must have put them there, because I didn’t.’

This type of response is easy to take as an accusation, but it is not. It is simply the person fighting to hold on to a small piece of control and to keep up the façade.

Sometimes the person in this first stage can drive family and friends wild wanting to check and recheck everything. Paul may ask, ‘Is it today that my son is coming?’ ‘What is the time?’ ‘Is today Monday?’ He checks again and again, until patience frays and frustration builds. It is important to remember that Paul is not doing this to annoy you; he is simply trying to reassure himself that he is in control.

People in this early stage seem to use every opportunity to exercise the control they feel they are losing PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA.

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