Alzheimer’s disease

Dementia
Dementia is a serious and often misunderstood brain disorder. People with dementia often face prejudice and are stigmatised. Moreover, dementia symptoms are often misinterpreted as a sign of old age, or attributed to laziness or past mental trauma. But dementia is a real, definable, and very debilitating disease involving:

• reduced memory and intellectual ability (thinking, processing information), which in turn leads to impaired ability to function normally and perform normal daily activities.
• deterioration in emotional control and social behaviour.

The specific symptoms of dementia can be broadly categorised into cognitive, functional, and behavioural/psychological changes:

• Cognitive changes – impaired short-term memory (such as impaired knowledge of recent events, repeating oneself, losing items around the house, poor organisation), difficulty in making decisions, reduced understanding of the concept of time and space, reduced ability to learn, and problems recognising friends and family.
• Functional changes – reduced ability to perform normal daily activities, as well as more complex tasks: difficulty handling money, difficulty maintaining personal hygiene, incontinence, difficulty getting dressed, imbalance and unsteady movement. Ultimately, Alzheimer’s sufferers will usually become completely bedridden.
• Behavioural/psychological changes – patients may also eventually develop behavioural and psychological disturbances, which increase the burden of care. They may develop and express socially inappropriate behaviour such as delusions, agitation/aggression, depression/dysphoria, and appetite/eating changes. Behavioural changes are particularly difficult for family and carers to deal with, and are often the reason for institutionalising the patient.

Alzheimer’s disease
Alzheimer’s disease is a devastating disease, with an insidious onset and relentless progress. It produces distressing changes in memory, thought, perception, and often behaviour. These changes increasingly impact upon the patient’s daily life, reducing functional independence, until ultimately, they are entirely dependent on others.

Quite apart from the obvious impact that AD has on the patient, it also has an enormous impact on their carers. Most carers are close relatives who provide care in the home, every day, all day – a role that can affect virtually every facet of their lives.

Alzheimer’s disease is the most common cause of dementia. It accounts for up to 80% of all dementia cases. Studies show that as many as 5% of all people above the age of 65 will develop Alzheimer’s disease.

Alzheimer’s disease is a progressive disease, where the neurons in the brain gradually degenerate. One of the consequences of this degeneration of the brain is an increased level of cellular waste between the neurons, known as plaques and tangles. As the disease progresses, the physical volume of the brain decreases as more and more neurons die.

Unfortunately, there is currently no cure for Alzheimer’s disease, and eventually the patient will die. All currently available treatments are symptomatic treatments, aimed at alleviating the symptoms of the disease, and trying to slow the deterioration of the patients. The average life expectancy following diagnosis is 7-12 years.

Patients
When a person is diagnosed with Alzheimer’s disease, there are many things to be taken into consideration and many important decisions to be made. This is because the disease will have an enormous impact on everyday life and activities. It is important to realise that this is not just a disease that affects the person diagnosed with AD, but also the family and friends of that person. It is therefore important to involve these people when planning for the future.

During the very early stages of the disease, it may be possible for the person with AD to maintain a fairly independent life. However, it will become increasingly necessary for another individual to oversee certain details such as medication, financial matters, and daily chores. As the AD symptoms become more obvious, the person will need more and more assistance, eventually leading to full-time care. This type of commitment is often too much for one carer alone, especially if they are a family member or close friend who has to cope with the emotional as well as the physical, challenges.

Legally, it is helpful if the person with AD and their family make arrangements for the future, before independence is lost. For example, usual processes such as drawing up a Will can be accompanied by signing a Power of Attorney. This gives a named individual the authority to make decisions and deal with financial matters on behalf of the patient once they are unable to take care of these things themselves. Also, discussing or officially stating preferences for their future care ensures that the person with AD makes their opinion known, thus relieving the carer of the burden of making difficult decisions.

Carers
Caring for a person with AD is a demanding and exhausting job – both emotionally and physically. An individual can become mentally tired through constant caring, and the many physical demands, such as helping with bathing, walking and dressing. Due to these strains, it is extremely difficult for a person with AD to be cared for by just one individual – individuals who are carers should try to recognise their limits and feel able to ask for as much help as they need. There is no need to be embarrassed or tp feel guilty about asking for extra support – the needs of the carer are just as important as those of the person with AD.

Family and friends may offer help. As long as all those involved are happy with the arrangement, this can be a good way of sharing responsibility. Alternatively, regular home visits from professional carers, or time spent in a day centre or nursing home may prove to be the most appropriate choices for the person with AD.

Throughout the course of AD, the responsible carer will experience many emotions – anger, loneliness, embarrassment, or even grief – and it is not wise to try to manage this alone. Seeking advice, sharing problems, and making time for personal needs should all be priorities for the carer. Family and friends can be a great source of comfort, but there are alternatives such as AD support and self-help groups, which are specially designed to help the carers of those with AD.