Alzheimer's disease - caring for someone with the disease

Written by: 
Paul Dinsdale

Alzheimer’s disease is a progressive condition in which the structure and chemistry of the brain become increasingly damaged over time.

A person with Alzheimer’s disease will experience a gradual decline in the ability to remember, understand, communicate and reason.

Approaching Alzheimer’s disease as a progression through three stages can be a useful way of understanding the changes that take place.

As a carer or caregiver, you will face different challenges and may be called on to behave differently:

However, this can only be a rough guide to the progress of Alzheimer’s disease - every individual will experience it differently.

Some symptoms may appear earlier or later, or not at all. The stages of the disease may overlap, and a person with the condition may need help with one task but be able to manage another activity alone.

There are also several very important practical issues for the carer.

In the early stages

Alzheimer’s disease usually begins with very minor changes in a person’s abilities or behaviour. At the time, these signs can often be mistakenly attributed to stressRelating to injury or concern., a bereavement or, in older people, to the normal process of ageing.

It is often only when looking back that carers and family members realise that these behavioural changes in a loved one were the beginnings of dementiaDecline in mental capacity, brain functioning and memory that affects day-to-day living..

A loss of memory for recent events is a common early sign of Alzheimer’s disease. People with Alzheimer’s disease may:

  • Forget about recent conversations or events
  • Repeat themselves frequently
  • Become slower at grasping new ideas, or lose the thread of what is being said
  • Sometimes become confused
  • Show poor judgment or find it harder to make decisions
  • Lose interest in other people or activities
  • Develop a readiness to blame others for taking mislaid items
  • Become unwilling to try out new things or adapt to change.

If you are caring for a person with Alzheimer’s disease, it is important to try to help him or her to remain as independent as possible in the early stages.

It may often be tempting to take over certain tasks and do them yourself. However, people with this condition are more likely to retain their sense of independence if they are encouraged to carry on doing things for themselves - with some support if necessary.

People with Alzheimer’s disease may also become anxious and agitated. They may feel distressed by their inability to manage tasks and may need some reassurance. When this happens, it can help to try to talk to the person affected, explain the situation and offer as much emotional support as possible.

In the middle stages

As Alzheimer’s disease progresses, behavioural changes in people with the condition become more marked. This can be seen as the middle stage of the disease.

At this stage, people with the condition:

  • Will usually need more support to help them cope with day-to-day tasks such as eating, washing, dressing or going to the bathroom
  • Are likely to become increasingly forgetful, particularly with names, and may sometimes repeat the same question or phrase a number of times because of the decline in their short-term memory
  • May also fail to recognise people or confuse them with others.

Some people with the condition may:

  • Become very easily upset, angry or aggressive, probably because they feel frustrated
  • Lose their confidence and become overly dependent on their caregiver.

Other symptoms in people with Alzheimer’s disease can include:

  • Becoming confused about where they are, or wandering off and becoming lost
  • Becoming muddled about time – for example, getting up at night because they are confusing night and day
  • Putting themselves at risk through their forgetfulness - for example, by not lighting the gas on the hob.

People with Alzheimer’s disease can also start behaving in ways that seem unusual, such as going outside in their nightclothes or experiencing difficulty with perception. In some cases, they may have hallucinations.

In the late stages

In the late stage of the condition, people with Alzheimer’s disease will need even more help, and will gradually become totally dependent on others for nursing care.

At this time, loss of memory can become very pronounced, and people with the condition may be unable to recognise familiar objects or surroundings or even immediate family members - although there can often be flashes of recognition.

People may become increasingly frail, and may start to shuffle or walk unsteadily, eventually becoming confined to a bed or wheelchair.

Other symptoms may include:

  • Problems with eating and, sometimes, swallowing
  • Significant weight loss
  • Incontinence
  • Gradual loss of speech.

If you are caring for a person who is in the late stages of Alzheimer’s disease, you should be aware that the person may become very restless, and may sometimes seem to be searching for someone or something.

People with late-stage Alzheimer’s disease may become distressed or aggressive, particularly if they feel threatened in some way. They may have angry outbursts from time to time, often during close personal care, usually because they do not understand what is happening.

If this happens, it’s important that the carer understands and remembers that the outburst is a symptom of the disease, not a personal attack.

Although people with late-stage Alzheimer’s disease may seem to have little understanding of speech, and may not recognise those around them, they may still seem to respond to affection and to being talked to in a calm soothing voice, or they may enjoy scents, music or stroking a pet.

Practical issues for the carer

If you are caring for a person with Alzheimer’s disease you may have to address a number of practical issues.

Getting access to the right services and support can make a big difference, both for the person with the condition and for his or her family and friends.

In many countries, the local authority has a duty to carry out an assessment of someone’s needs to decide which available services would best help meet these needs.

Such services may typically include:

  • Home care, equipment and adaptations
  • Day care
  • Respite care in a care home or in the person’s own home
  • Residential care.

A carer may also have to help with arranging financial and legal affairs on behalf of the person with Alzheimer’s disease, and will need to seek advice from a solicitor when completing legal documents. It will often be up to the caregiver to ensure that all important papers are in order and can easily be found.

It is also important for a carer to check that the person with dementiaDecline in mental capacity, brain functioning and memory that affects day-to-day living. is claiming all the welfare benefits to which he or she is entitled.

If you are caring for a person with Alzheimer’s disease you will probably need to provide emotional and physical support for the person, and be a legal and financial guardian. This can be a difficult and demanding role.