Dementia & Alzheimers

How to be a Care Giver for those in Need

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Types of dementia

It can be difficult for service providers to tell what type of dementia a person has when the dementia is in the final stages. The changes that occur due to dementia, and the medical complications that arise as a result are similar for all dementias. Therefore, the information I am going to give you is useful for anyone wanting information about the final stages of dementia, irrespective of the type of dementia.

‘Stages’ of dementia

When you read about dementia, or speak to doctors and nurses about the condition, you may notice that people use different terms to discuss the ‘stages’ of dementia. A ‘stage’ is simply a term used to conveniently describe a group of behaviors and medical issues that tend to occur together as dementia progresses.

There are no clear definitions of when a ‘stage’ starts or ends. Each experience of dementia
is different, and the effects of the illness may change daily. However, as dementia progresses some behaviors of concern or medical issues gradually become less noticeable and other behaviors of concern and medical issues become more important. When this happens, care givers take note because the changes may signal a progression of the condition and a move to a new ‘stage’.

I will be writing specifically talking about the final stages of dementia, when a person needs care 24 hours a day, 7 days a week, and is usually living in your home.

The terms severe stage and end stage dementia are used in this informational writings, Other terms used to describe a similar time in the course of dementia progression are late stage; third stage; advanced stage and terminal stage.

Dementia is unpredictable and varies from person to person. The course of dementia does not follow a set pattern, or a set time period.

As a general guide:

Time frame for dementia

Dementia is a progressive, terminal condition that cannot be cured. It is a sad fact that people with dementia will have a shortened life span because of their condition. As dementia progresses, the brain stops working properly. All bodily organs and systems, which are controlled by the brain, are affected. As these bodily systems fail, a variety of medical complications occur. Death is the inevitable outcome.

The changes that occur as dementia progresses are discussed later.

Who can legally make substitute decisions about medical care for a person with dementia?

People with dementia may have impaired capacity to make decisions. Capacity to make decisions about health care is a contentious issue. People with dementia are presumed to have the capacity to make their own decisions until this is proven otherwise.

In the severe and end stages of dementia capacity is always impaired. Another person will need
to make all decisions on behalf of the person with dementia. This includes all decisions about the medical treatment the person living with dementia needs. Under the law, there are specific people listed who are able to consent to medical treatments for another person.

The Guardianship Act (1987) refers to a person legally able to give substitute consent as a ‘person responsible’. Under the Act, the ‘person responsible’ need not be a blood relative of the person needing a substitute decision-maker. The order of who can legally make decisions about medical care for another person is: a guardian (appointed by a Court or Guardianship Tribunal or by the person with dementia when they had capacity); if none, then a spouse or defacto spouse (including a same sex partner) with a close relationship to the person; if none, then an unpaid carer (the person can be receiving the Carer’s Allowance); if none, then a relative or friend who has a close personal relationship with the person needing decisions made on his or her behalf.

It is important to understand that a person with dementia, like any other member of the community, may die suddenly and unexpectedly, especially if the person has a history of other medical conditions like heart or lung disease, or high blood pressure.

Death for a person with dementia may occur from the moderate stage onwards, depending on the other medical conditions of the person. This needs to be kept in mind as you discuss likely scenarios with the doctors or specialists you consult. If you are in doubt about who the ‘person responsible’ is in your situation, or want to discuss the matter further, please speak to the doctor caring for the person you know with dementia.

Severe and end stage dementia

It is wise to have some plans in place in case a crisis situation such as an unexpected stroke or heart attack occurs. Not everyone will experience all of the symptoms mentioned.

The severe stage of dementia may last for about 2 years, and the end stage for 6 to 12 months, although these time scales are an average and may be shorter or longer for any individual. Changes that the person with dementia experiences are generally very gradual.

As the brain fails due to dementia progression, changes can be noticed in four major areas:

• cognitive ability (the way the person thinks and remembers);
• ability to talk;
• behaviors (the way the person acts) and emotions (feelings);
• functional ability (the person’s ability to walk and look after basic tasks and needs).

Each of these areas will be considered in turn. Remember that we are discussing here common changes that may be seen.

One of the earliest signs a person with dementia experiences is that they become forgetful, and unable to solve problems, or start and finish any activities. These memory problems continue as the dementia progresses.

In the severe stage of the illness, the person with dementia:

• will only remember little snippets of events that happened a long time ago, and memories of recent events such as having a shower or meal that day will not be remembered;

• may forget both the name of their husband, wife, partner, or children and the relationship they had with them, but will usually remember their own name;

• will lose the ability to solve problems, start tasks and carry them through, or understand requests from other people.

As dementia progresses a further decline in cognitive skills occurs, so the person is unable to remember who anyone is, including a spouse, partner or other close relatives and friends.
Being unable to recognise even your closest loved ones is one of the signs that the person with dementia has entered the end stage of the condition.

Cognitive (thinking) ability
Ability to talk

The ability to talk is also affected as the brain fails. At first the sentences become jumbled, then the words themselves may become jumbled. A person with Fronto-Temporal Lobar Degeneration may have language problems from very early in the condition.

As dementia progresses, the ability to talk is steadily lost, until only a few words are left that can be said, or the person may become mute and unable to speak at all. Being able to speak only about 6 words or less is one of the signs that the person has entered the end stage of dementia.

Instead of talking, people with end stage dementia may sometimes make strange sounds, or even scream. If this happens, it usually means that they are trying to communicate something, such as that they are uncomfortable (maybe they are hot, cold, or in pain for example).

Care Givers can usually work out what is wrong, and help to settle the person.

Remember that although a person in this stage of dementia may not be able to talk to you in a meaningful way, he or she is still aware of your presence, and you can still provide comfort and reassurance.

Changes in behaviour and emotions are extremely common, and can be very difficult for everybody involved with the person with dementia. Some of the behaviors of concern listed here occur much earlier in the course of certain types of dementia than others. For example, people with Fronto-Temporal Lobar Degeneration may become apathetic or disinhibited early, while people with Dementia with Lewy bodies often experience visual hallucinations early.

People living with severe dementia may experience some of the following:

• delusions (mistaken beliefs) which may cause them to think, for example, that other people are trying to poison them, or that a close relative is an impostor;
• hallucinations (seeing, hearing, feeling, tasting, or smelling something that doesn’t really exist);
• being agitated or anxious and distressed, and seeking reassurance from other people;
• wandering aimlessly, or pacing up and down;
• being intrusive (going in to places where they are not invited such as other people’s rooms in a residential care facility);
• being sexually disinhibited (having inappropriate sexual behaviour);
• appearing to be depressed, apathetic and withdrawn (having no energy, or interest in what is happening around them);

behaviors (actions) and emotions (feelings)

• being aggressive or violent;
• not allowing carers to look after them (known as being resistive).

The number of behaviors of concern may lessen as the person with dementia progresses towards end stage.

Monitoring and managing behaviors are a form of communication for the person with dementia, and need to be monitored and assessed to try to establish their cause. For example, a new behavior such as agitation may be due to a physical condition like a sore throat or headache that can be easily treated. The behavior starts because the person with dementia is unable to tell another person he or she is feeling unwell. When the physical complaint is managed, the behaviour lessens or stops.

Any change in the behavior of a person with dementia, whether an increase or decrease in the behavior, or a new behavior starting, needs to be assessed in case there is a treatable cause for the behavior.

The regular carers, family and friends of a person with dementia are often in the best position to work out the cause of the behavior. After all, they know what the person is usually like, and know how the person reacts when unwell.

A key aspect of caring for people with dementia who may be agitated and wandering is to
offer them a safe environment where they can move around without the need to limit their movements.

Gradually the ability of people with dementia to look after themselves will be lost as the condition continues to damage the brain.

Bathing and Grooming
People with dementia need more and more help to bathe and groom as the dementia progresses. Eventually the ability to perform any of the grooming and personal care tasks like showering and dressing is lost. The person may become afraid of having a bath or shower, and become resistive to care (fight against having care attended), or insist they have had a shower when they haven’t. In the end stage of dementia the individual may not even seem to be aware that grooming is being attended.

Walking and movement
People with Dementia with Lewy bodies may experience difficulties with walking and falling, quite early in the condition. For other types of dementias, the ability to walk will be gradually lost as the dementia advances into the severe stage.

Functional ability (ability to walk and look after basic tasks and needs)

At first you might notice that the person seems to be walking awkwardly and appearing to be off balance. They may become more likely to have a fall, and need to use a walking stick or frame. Falls may occur despite everyone involved trying to prevent them.

Eventually the ability to walk is lost. When this happens, the individual with dementia needs to spend most of the time sitting in a chair or being cared for in bed. Losing the ability to walk is one of the signs that the person with dementia has entered the end stage of the illness.

There are a number of serious problems that occur once the ability to walk is lost. The person’s muscles become weak and waste as a natural outcome of not using the muscles anymore. The person becomes frailer and increasingly likely to develop medical complications, like infections and pressure ulcers caused by lying in the one position for too long.

Facial expressions
People with end stage dementia may lose the ability to smile or show any expression on their face, because of the muscle weakness already discussed. Losing facial expressions is one of the signs of end stage dementia. Having lost the ability to smile and show facial expressions does not mean that the person with dementia is not aware of their surroundings. They can feel the touch of your hand, or a breeze blowing on their face. The ability to hear remains, so music and laughter and family stories and the sounds of activity around are heard.

The ability to go to the toilet without help is also lost as the dementia advances. One of the first changes that occurs to a person with dementia is confusion about direction, so he or she cannot find the toilet. As time progresses, the usual activities associated with toileting are forgotten, like flushing the toilet and washing the hands. Gradually the person forgets why they need to go to the toilet and becomes incontinent, firstly of urine. This means they may start to wet their pants and need to wear pads. Forgetfulness and problems with walking eventually lead to the person with dementia becoming unable to use the toilet for bowel motions as well. One of the signs of end stage dementia is that the person is doubly incontinent: he or she soils and wets the bed and clothes, and needs to wear a pad all the time.

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