Patient voices: The real Malcom

A video that reflects on the quality of services in physical end-of-life dementia care. Watch the video here.

Dementia is a term used to describe a collection of symptoms, including memory loss, problems with reasoning, perception and communication skills, caused by diseases of the brain. It is a progressive condition that can lead to a reduction in a person’s abilities and skills in carrying out routine activities such as washing, dressing and cooking. There are a number of different types of dementia, with Alzheimer’s disease and vascular dementia being the most common.

Dementia is becoming much more common in the UK, especially among older people. You’re therefore likely to meet someone with dementia in your role as a health care assistant.

Caring for someone with dementia is hugely rewarding and calls for you to use all of your skills as a health care assistant. But it can also be very challenging. The person may mistake you for someone else, perhaps from his or her distant past, and hold false beliefs about where they are and what they’re doing (a man who has been retired for many years constantly putting his jacket on and saying he’s going off to work, for instance). Sometimes, the person can become agitated because of the confusion he or she feels and may be verbally or even physically aggressive. This can make some health care workers reluctant to care for people with dementia.

Alzheimer’s Disease International has produced brief advice for people caring for a loved one with dementia that we can use to guide our practice as health care assistants. On dignity, the advice states that: ‘The person with dementia is an individual with feelings − treat them with respect and dignity.’ It goes on to say:

  • remember that the person you care for is still an individual with feelings; dementia affects people in different ways − in the early stages of the disease, the person may be aware that they are struggling with everyday tasks they once found easy
  • what you and others say and do can be disturbing − avoid discussing the person’s condition in his or her presence.

The advice also presents guidance on various aspects of care that will help to promote the dignity of people with dementia, such as:

  • establishing routines
  • supporting independence
  • avoiding confrontation
  • simplifying tasks
  • improving safety
  • keeping active
  • communicating
  • using memory aids.

You may like to take a look at the advice, which is very brief, at the Alzheimer’s Disease International website. In addition, the RCN provides further information, see: Dementia.

As you can imagine, and may even have experienced if you have cared for someone with dementia, the condition can leave the person in a very vulnerable position. Legislation exists across the UK to protect the interests and dignity of people who are vulnerable due to a mental health problem, including dementia. It is important to have a basic understanding of these laws, because they affect what we can do as health care workers to support people with dementia and their families. Again, no one would expect you to know every sentence and clause of the Act that relates to your country, but a basic understanding will help you provide care that is in the person’s best interests and, importantly, within the law. You should speak to your manager or supervisor to explore training and guidance options, but in the meantime, summaries of the laws for each country can be found at these websites:

We need to note, however, that we can incorrectly assume a person (particularly an older person) has dementia because he or she appears confused or agitated. Many conditions can ‘mimic’ the signs of dementia in older people – an infection with fever, dehydration, the effect of some drugs (legal or otherwise), alcohol withdrawal and even severe constipation. You might hear colleagues in the team speaking of this as a state of ‘delirium’. The key thing is that while (to date) dementia is not reversible (although new treatments appear to be successful in slowing its progression), delirium is reversible. Rapid treatment of the underlying cause usually results in the person returning to his or her normal mental state. It is very important, therefore, not to believe someone has dementia until it has been formally diagnosed.

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