Despite Dementia affecting more than 50 million people worldwide, with Alzheimer’s contributing to an estimated 60-70% of those cases, there are still a lot of misconceptions and misunderstanding around the disease – which is why, every September, World Alzheimer’s Month aims to raise awareness.
It may feel completely overwhelming, sad and scary when someone in the family is diagnosed with Alzheimer’s, and it’s natural to worry that you’re saying all the wrong things. So how best can you support them, while still ensuring they feel empowered and as independent as possible?
It’s normal to feel a sense of grief yourself
Fran Vandelli, a dementia lead for Bupa Care Homes, says: “It’s never easy hearing that a loved one has been diagnosed with Alzheimer’s and feelings of grief or upset are normal.
“However, it’s important to remember that with the right support, people with dementia can live well and you’ve still got time to make good memories together.
“The feelings of grief should pass as you come to terms with the news.” If they’re persistent or affecting your ability to live normally though, do speak to your doctor or contact the Alzheimer’s Association for support. As a loved one of a person with dementia, it’s important to look after yourself too.
Don’t be afraid to talk to them about memories
Remember that they’re still the same person you know and love, so you can still talk about the things they like, says Vandelli. In fact, it can really help them if you do so.
“While someone in the earlier stages of dementia might not be able to remember last night’s football match, they might still be able to share stories of how they used to watch their favourite team growing up. If your loved one finds themselves unable to find the right words to express themselves, watch and listen carefully as they could be using gestures or facial expressions.”
Don’t be afraid to say if you haven’t quite understood what they’ve meant though, she explains, “and feel free to offer a word if you think you know what they’re trying to say.”
Be tactful though. “Try not to talk over someone, finish their sentences or cut them off from contributing. Just because they can’t find the words, doesn’t mean they have nothing to say,” Vandelli points out.
If they’re in the later stages of dementia or if answering questions is becoming overwhelming for them, she suggests using simple closed ‘yes/no’ questions, or offering choices using objects as visual prompts. For example offering a cup of tea with a tea bag.
Try to be patient and positive
“One of the most important things you can do is be patient,” says Vandelli. “When people living with dementia are confused, they can get upset or frustrated, but you can be a calming influence and help them feel better. Be there to offer a shoulder to cry on, and a morale boost when they need it.
“For people living with dementia of any type, the focus is often on what they can’t do rather than what they can do. They may stop being asked to babysit their grandchildren or nip to the shops, which can feel disempowering, especially if they’re still able to do these things.”
Don’t immediately take over
Offer support but only where it’s needed, advises Vandelli – particularly in the earlier stages of Alzheimer’s.
“Don’t rush to take over things like cooking or managing bills, as this may reduce your love one’s skills before it’s necessary. Instead, empower them to do things themselves or offer to do things together. Setting reminders on their calendar like ‘take out the bins’ can help them retain a sense of independence,” she says.
There may be some changes you can make with them around the home to help. “Decluttering will not only make it easier for people to find the things they need, but reduce their chances of trips and falls, which increase as the condition progresses,” she says. “As the condition progresses, it may also be useful to start labelling items or rooms around the home, so people know where they’re going and how to switch things on and off.”
Ultimately, it’s important to keep them involved. Even if you are helping out with cooking or gardening, offer to do it with them rather than do it yourself. In fact, helping them retain this level of independence can help them live well with Alzheimer’s.
Plan for the future
There will probably come a time when you need support and may need a care home. “There’s no shame in reaching out for this kind of help,” Vandelli says. “It’s all about finding the best outcomes for your loved one and can ultimately have a positive impact on everyone involved.
“By being proactive now, you can get a good idea of the support available, which will help you move quickly when it’s needed.”
Know that just being there helps
In the later stages of Alzheimer’s or another form of dementia, you might wonder if it’s even worth visiting if they can’t remember the visit or don’t fully understand who you are. But, as Vandelli says, a person’s need for social contact doesn’t disappear because they have the disease.
“The feelings of companionship and purpose go hand in hand,” she says. “Even in the later stages of the condition, when your loved one might struggle to recognise you or remember your time together, they can still benefit from knowing that they have someone nearby.
“Simple things, like holding someone’s hand and reassuring them can make a huge difference.”
More information on dementia, and how to support people living with the condition, can be found at bupa.co.uk/dementia.