Ten things volunteers should know about dementia

1. What is Dementia

The word “dementia” describes a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language and can lead to changes in mood or behavior. These changes are often small to start with, but typically become more severe and can affect daily life. Dementia is caused when nerve cells in the brain are damaged by a variety of diseases, such as Alzheimer’s or vascular disease The symptoms vary between person depending on the cause and which area of the brain has been damaged. Regardless of which type of dementia is diagnosed and what part of the brain is affected, each person will experience dementia in their own unique way.

 

2. Undiagnosed

In the early stages people may be unaware of any problem, and if they do become aware, they often hold back from seeking help fearful that a diagnosis may change their lives irreversibly. As a volunteer you are not a clinician but simply trying to pick up leads from people you are supporting so that you can understand and help them more effectively. Focus on practical matters and avoid talking in medical terms or trying to diagnose symptoms. Your host organisation will advise if asked.

 
3. Is the person coping?

If you are concerned the person (or their carer) is not coping and does not have a network in place to provide support, then flag this to your host organisation so a referral can be made. You may need to follow your host organisation’s safeguarding procedure (they will advise).

 

4. Carers and Partners

Carers of dementia patients are often under huge pressure stemming from the challenges of isolation. Remember to ask whether they are being supported and if they need any help. If you are concerned, or are not coping, then flag this to the host organisation so a referral can be made. You may need to follow your host organisation’s safeguarding procedure (they will advise).

 

5. Prepare for the conversation

To prepare for the conversation ensure it is helpful to feel relaxed so you can talk at their pace. Some people with dementia will repeat things (for example, about the weather or saying hello) because they want to keep the conversation flowing but cannot remember what to talk about. This can be the cue to bring the conversation back to a focus.

6. Hints for a fulfilling conversation
  • Every time, introduce yourself and say why you are calling (it is possible the person you’re calling may not remember).

  • Speak slowly and clearly, using short sentences.

  • Be a good listener and give the person time to think and respond.

  • Keep things simple, for example, by using questions that only need a “yes” or “no” answer.

  • Use the person’s name often, this is a reminder to the person with dementia that you are still talking to them and can help them maintain concentration and keep the conversation going.

  • Be prepared for the conversation to cover random topics.

 

“If you can only remember for 30 seconds and are facing someone talking endlessly at you, very quickly you forget what the beginning of the conversation was about. All you are facing is a stream of words that might be relatively meaningless” - Professor Graham Stokes

 

7. Memory recall

Due to memory loss, people who have dementia may have trouble recalling what they did earlier in the day. How much they can remember may diminish as time goes on. Avoid testing the person’s memory by asking them what they did earlier. Take your lead from the person and don’t switch topics too often.

 
8. Finding the right word

People with dementia can find it difficult to remember the right word: for example, a female name such as “Julie” may come to represent every female helper rather than referring to Julie in person. A reference to “needing my mum” may mean that the person is feeling scared and unattached. Words used by a person with dementia don’t always make sense. It is important not to assume what has been said. Try to check you are on the right track by repeating a word or phrase used, or suggest other words to confirm understanding of what has been said

 

9. Fact or Fiction

Dementia sufferers sometimes recall dreamed events as being real and may be unable to distinguish reality from dreams. It is therefore important not to correct or question validity. It is best just to listen and follow the flow of conversation and try to find any hidden meaning or clues in their conversation.

 
10. Scams and Fraud

Listen out for clues that they may have received fraudulent phone calls trying to sell scams. If you are concerned, or are not coping, then flag this to the host organisation so a referral can be made. You may need to follow your host organisation’s safeguarding procedure (they will advise).

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