How can you help?

It may come as a shock when someone you know is diagnosed with dementia, but once the news has settled – there is the capacity to live life well. The person with dementia is still the same person you have loved over the years, and this will never change. But, more than ever, they will need your continuing support as they face the future with a gradually progressive, debilitating neurological disease.

• If you are part of the extended family or a family friend, it is important that you continue to support both the person living with dementia and their main care partner. It is a sad fact that people with dementia and their family / whanau often feel abandoned by people they thought were friends. It is helpful to put yourself in their shoes to understand what it feels like to be them as they deal with the dementia process.
• Accept that being there will be difficult, especially as the condition progresses. There may be painful, embarrassing, frustrating and sad times, but there will also be rich times with periods of warmth, joy, satisfaction and a good deal of laughter.
• Listen to what the person with dementia and their care partner want.
  • Sometimes it will be just listening, allowing people to let off steam.
  • The carer might want someone to stay while he/she has a break.
  • The person with dementia might want to do one of their usual hobbies – Walking on the beach, having a coffee or playing golf (you might have to keep the score).
• People with dementia and their carers don’t always ask for help, so it is good if you can offer assistance when you see a need or at any other time.
• Learn as much as you can about dementia and if you know what type of dementia your family member or friend has, find out about that. This will help you to understand what is happening and to anticipate difficulties that might arise. If you know which parts of the brain are affected, then you will also be aware of what is working well for the person and you can engage with them in that way. For example, singing and the ability to appreciate music are often preserved even when dementia is very advanced. You might want to read Dementia New Zealand pamphlets or attend an education session with your local Dementia New Zealand affiliates.
• Feeling isolated can speed the course of depression so it is important that you develop your communication skills so that you can continue to connect with the person with dementia. Talk with the main care partner about this as they will have worked out some communication strategies that you can share.
• Encourage the person to make plans for the future. This might include updating a Will, appointing Enduring Powers of Attorney, making an Advanced Care Plan or even deciding what to do with the dog if it gets too much to look after it. Different people have different things that matter to them. Over time, it is useful to have a discussion and perhaps write down what they might like to happen to them later.
• Be patient and tolerant. You may feel upset by what the person does or says, especially if it seems out of character. Remember that they have a physical disease of the brain and their behaviour is affected by this. They are not trying to annoy you! Being disapproving or trying to correct them is not helpful. Just take them as they are remembering they are still themselves, just in a different way.
• Keep doing the things you used to enjoy together. It’s easy to feel concerned that the person with dementia does not always recall what they have done and wonder whether the activity was worth it. However, people do not have to remember, to enjoy things. (We enjoyed the meal we had last Tuesday because of the company we had, though we can’t remember now what it was we ate). Emotions, be they happy or sad, can last a lot longer than the experience that caused them.