It comes as a shock when someone close to you is diagnosed with dementia, but this doesn’t mean the end of the world. The person with dementia is still the same person you have loved over the years, and this will never change. They will need your continuing support as they face the future with a progressive and debilitating neurological disease.
How can you help?
Be there
Be there for them and the person who will be their primary care partner. Tell them you will stick with them through the course of the illness and mean it. Unfortunately, people with dementia and their family/whānau are often abandoned by people they thought were friends. Being there will be difficult, especially as the disease becomes more severe. You will have painful, embarrassing, frustrating and sad times, but there will also be periods of warmth, joy, satisfaction and a good deal of laughter.
Listen
Listen to what the person with dementia and their care partner want: Sometimes it will be just listening, allowing people to let off steam. Maybe the care partner wants someone to stay while they take a break or while the person with dementia wants to do one of their usual hobbies. People with dementia and their care partners don’t always ask for help, so it’s good if you can offer help.
Learn as much as you can about dementia and if you know what type of dementia your family member or friend has, find out more. This will help you understand what is happening and what difficulties may arise. If you know which parts of the brain are affected, you can engage with them in a way that uses the unaffected parts. The ability to appreciate music is often preserved even dementia is severe.
Communicate
Develop your communication skills so that you can continue to connect with the person with dementia. Isolation can speed the course of the illness and cause depression. The primary care partner will have worked out some communication strategies that you can share.
Encourage the person to make plans. 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 when they can’t look after it. Different people have different things that matter to them. Over time, it is useful to have a discussion and perhaps write what their wishes are.
Be patient and tolerant
You may be 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 and correcting them won’t help. Just take them as they are, remembering they are still themselves, just in a different way.
Keep doing the things together
Some people are bothered 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, though we can’t remember now what it was. Emotions, be they happy or sad, can last a lot longer than the experience that caused them. A pleasurable activity can make someone feel happy for a long time after it has ended.
Inheriting dementia
Family members often worry that they will inherit dementia. There are some very rare inherited forms of dementia. These usually start when the person is relatively young and family members can have genetic testing to see if they are susceptible. However, for most people, dementia begins in late life and is so common that most people have an affected elderly relative. Some genes make an individual a little more likely to get Alzheimer’s disease. However, other things like smoking, lack of education, lack of exercise, high blood pressure, obesity and poor eating habits play a much larger role in developing dementia. So, the best way to reduce your chances of getting dementia is to live a socially involved and healthy lifestyle.
Finally
It’s important to remember the person with dementia is still the same person you know and love. Keep in touch, learn to go at their pace and in their way and encourage others to stay involved as well. That is the best thing you can do for them.