Nobody wishes for a dementia diagnosis, but hearing those words can help family and friends provide appropriate support – as long as they’re given the right information.
“While the initial diagnosis can be difficult, fear is often driven by a lack of understanding about the disease,” says CEO of Alzheimer’s Australia Maree McCabe. “People almost always think dementia is associated with memory loss, but that’s not true.
“There are more than 100 types of the disease, and that will determine the symptoms and individual experiences.”
If you’ve taken on the role of carer for a loved one, don’t underestimate the impact it can have on you.
“It is very important to arm yourself with knowledge so you can look after your own health while supporting the person you care about,” Maree says.
When someone is diagnosed with dementia, it’s normal to experience a range of emotions, such as sadness, anger and acute worry.
“One of the main areas of concern is whether to tell family and friends about the diagnosis, because people often worry about their loved one being labelled and others treating them differently,” Maree says.
While the decision about who to tell rests with the person diagnosed and their partner or carer, remember that hiding the disease neither prevents it nor makes it go away. In contrast, being frank about it can be helpful to family and friends, especially when socialising.
“There can be a sense of relief for others upon learning the news, because a diagnosis can help explain certain behaviours,” she says. “Knowledge is vital. Many symptoms that you may find distressing can be put into context with the right information.”
The physical and emotional demands of looking after someone with dementia can have a significant impact on your own health.
“Taking care of your own needs is crucial if you want to look after someone else,” Maree says. “Otherwise, the demands can wear you down.”
Maintaining a healthy diet, engaging in regular physical activity, doing things you love and catching up with friends are crucial. Be kind to yourself and share your concerns as they arise, rather than letting them build up.
“Talk things over with family, friends and other people in similar situations,” Maree adds. “When you open up, it gives people permission to share their feelings, too, which can be a welcome reminder that you’re not on your own.”
If you’re feeling overwhelmed, sad or anxious, you may like to speak to a mental health professional.
While it can be difficult asking for or accepting assistance, involving family can help to relieve some of the pressure.
“Taking turns to prepare meals, clean the house and buy groceries not only makes a difference to your workload, but also provides a chance for you to take a pleasant timeout,” Maree suggests.
“Even setting up a visitors’ roster so family members know to drop by on different days is useful. Whether they choose to go for a walk, do activities or just sit with the person you’re caring for, getting family involved early on makes it much easier in the long run.”
If that’s not an option, reach out to social services or organisations with trained dementia care workers who can provide guidance and support.
“Alzheimer’s Australia offers support, education and counselling,” Maree says.
When caring for someone, try to support and encourage them to continue doing as much as they can for themselves. Always focus on what they can do, rather than on what they can’t.
“It’s important your loved one feels like they’re continuing to make a difference and contribute,” Maree says.
At times, people with dementia will behave a little out of character.
“Remember that it’s not the person but rather the disease causing the behaviour,” Maree says. Try to remain calm and remember that, deep down, they’re still the same person.
When the pressure and strain of caregiving all becomes too much, avoid burnout by taking a break.
“Time-out for yourself is crucial because carers of people living with dementia tend to have poorer health than carers of people with other conditions,” Maree says.
Respite care relieves you from your responsibilities, if only for a short while. It also gives the person living with dementia an opportunity to meet new people.
“Start off with small breaks and get into a routine of having family members help in those periods,” she says.