Alzheimer's Disease - A Carer's Guide
There are various definitions of Alzheimer ’s disease including:
- “The slow onset of memory loss leading to a gradual progression to a loss of judgement and changes in behaviour and temperament.”
- “A living death”
- “The global impairment of higher functions, including memory, the capacity to solve problems of day to day living, the performance of learned percepto-motor skills (for example tasks like washing, dressing and eating), and the control of emotional reactions in the absence of gross clouding of consciousness.”
Memory loss occurs in all cases of Alzheimer’s disease. The most recent memories are the first to be affected, the things we’ve done in the last few hours or days. Later, as the disease progresses, the past memory also deteriorates.
The fact that memory loss is such an important feature of Alzheimer’s, the testing of a person’s memory is an easy and cheap method of diagnosing the condition.
Questions asked should be extremely basic, for example:
- What day is it today?
- How old are you?
- Where are we now?
- What year is it?
- What month?
- Count backwards from 20 to 1.
These questions will test a person’s short term memory, and also orientation; disorientation being another problem experienced by Alzheimer's suffers.
Disorientation, or not knowing who or where you are, is closely connected to memory loss. Typically, an Alzheimer’s sufferer will forget birthdays, become unsure of what day it is, and even forgets their own name. You can understand why Alzheimer’s has been called ‘a living death’.
Because it is the short-term memory that goes first, suffers who go out alone have often returned to a house they lived in years ago, thinking they have come home.
Disorientation inside the home can become a problem too but not until the disease is in its later stages. It is important that nothing is moved or changed in the home to preserve continuity. If their environment and routine remains unchanged, an Alzheimer’s sufferer will remain more content and confident; change the environment however and their confusion and disorientation becomes readily apparent. This is why treatment at home rather than in hospital is preferred and transfer to hospital should be a last resort.
One of the cruellest aspects of Alzheimer’s disease is the change in personality many people experience. Often, the general behaviour and personality of Alzheimers suffers in the later stages will be in complete contrast to their usual behaviour they exhibited in earlier life.
Mood swings, from being ecstatically happy to extremely sad, verbal and sometimes physical aggression, and extreme anxiety and nervousness often affect the Alzheimers sufferer and, of course, the carer who can help best by offering continuous reassurance and patience.
Personal hygiene often becomes a major issue with the sufferer forgetting to wash and bathe. Body odour, and stained and soiled clothing and hands can be a cause of great stress and result in a cruel loss of dignity.
During the early stages understanding simple speech remains unaffected, but finding the correct words can be a problem and the Alzheimers sufferer will often leave sentences unfinished. The taking of messages particularly over the telephone can be difficult and this is often one of the first signs of dementia.
As the disease worsens communication will become more difficult as comprehension skills decrease. Eventually their whole speech can become gibberish until eventually the Alzheimer sufferer will cease to talk altogether and will withdraw into his or her small world.
Although the amount of sleep required by an Alzheimers sufferer is unlikely to change, their sleep cycle may do. So, instead of wanting to sleep at night and be awake during the day, this could become reversed. This isn’t a problem of itself except for the care giver who will have his or her nights disrupted.
The care giver is advised to keep the patient active and awake during the day as much as possible, even though it is tempting to seize an opportunity to do some chores and enjoy some peace and quiet should the sufferer fall asleep. A warm drink at bedtime may help, although any problems with incontinence should be considered. Ensure there are no other reasons for the restless nights, such as joint pain or night cramps. In the event the latter are a problem, administer mild painkillers. In the worst case scenario, many people use a night sitting service to ensure the sufferer is closely supervised while the carer gets a few nights of undisturbed sleep.
Eating and drinking can be a problem with Alzheimer suffers. More accurately the lack of food and drink and the resulting malnutrition is the problem.
A sufferer may develop an irrational fear of the food you are providing, or they may simply forget or refuse to eat.
Two likely causes of the latter are ill-fitting dentures, especially if the sufferer has lost weight; and constipation. A well balanced diet with plenty of roughage and a high fluid intake will help prevent constipation.
General Advice For Carers
It is difficult to judge who has the worse time, the Alzheimers sufferer or the carer. In the early stages of the disease it is probably the sufferer, in the latter stages it is undoubtedly the carer.
Help minimise disorientation by not moving anything in the home. To do so will make their confusion worse.
Admit an Alzheimers suffer to hospital as a last resort. Once you do so disorientation and confusion will increase markedly.
Do not let a sufferer out alone, they may have difficulty finding the way back home.
Do all you can to help the sufferer maintain dignity.
- A warm drink or a tot of their favourite alcoholic drink may aid sleep at night.
- Try to keep the patient active and awake during the day.
- Keep a cold drink nearby to remind the sufferer to take fluids.
- Keep disruption to routine to a minimum to prolong the Alzheimers sufferer’s independence as long as possible.
Closely supervise medication. It is very easy for the Alzheimers sufferer to forget they have taken their medication, and take it repeatedly.
Alzheimer’s disease is progressive and incurable, although there are drugs that can slow the progression. It is one of the saddest diseases in that it is difficult to care for or regularly visit someone who no longer knows your name or recognises you.
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