You’ve gone to your mother’s house to visit. You offer to put the kettle on because she’s tired and parched from being out in the garden. But when you go to get the milk you find a peculiar surprise behind the fridge door. In there, you see out-of-date groceries and her hairbrush. You know your mother always prides herself on keeping an orderly home and that hairbrush belongs on her dressing table. The discovery is made all the more disturbing when you realise she’s been rather forgetful lately, repeating stories she’s already shared with you on phone calls. You also notice a letter about an unpaid bill on the dining table and your mother seems somewhat withdrawn. You have to ask yourself an uncomfortable question: could these be the first signs of Alzheimer’s disease?
Witnessing the cruel cognitive decline of someone you love, not least someone who once was your main carer, is painful and unsettling. However, recognising symptoms and doing something about it means the person can get a diagnosis, if one is necessary, and the help they might need to preserve wellbeing. So how does one act on such suspicions in a sensitive and helpful way?
When should you broach the subject?
There can be fewer more upsetting things to talk about with someone than sharing your concerns about their health, but sometimes it is the best thing you can do for them. Knowing when to have that conversation can be tricky though.
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Dr Tim Beanland, head of knowledge management at Alzheimer’s Society, suggests the appropriate time to start thinking about having a conversation is when you can see changes that cause concern or begin to affect the person’s quality of life. Be watchful of activities such as changes in how the person drives, for instance, or if they are having minor accidents at home, such as leaving the hob on. “If these are causing you concern, that is the stage I’d want to ask for professional help and do something about it,” says Beanland.
How do you have that conversation?
The person may already suspect that something is going on, others may think there is nothing wrong. Firstly, though, it is really important to ask yourself if you are the right person to be having that conversation. If you are, pick the right time and place. Beanland says: “Find somewhere quiet and away from distractions. In case the person agrees they need to see a GP, it helps to talk when the surgery is open so the appointment can be booked there and then.”
Being calm and reassuring is critical. “We say to people, start generally,” Beanland explains. “Don’t jump in and say, ‘I think you’ve got dementia.’ Try, ‘I’m a bit worried about you – have you noticed any changes recently?’ And maybe give them specific examples of your concerns.”
If the person agrees to see a GP, that is a positive step in the right direction because there is help out there for people. However, if the person rejects help things become a little more challenging. You can go to the patient’s GP and tell them you’re concerned but the doctor is not able to share information back with you because of patient confidentially.
In any case, Beanland recommends that the person is accompanied by someone who knows him or her well when seeing a GP, both for support and sometimes to gain the bigger picture. “The son, daughter, partner, etc might have noticed things and, if the person consents to them attending too, these can be shared with the GP,” he says.
How can you offer emotional support?
Never underestimate the power of just being there and listening to someone’s feelings. “It will be an emotional roller-coaster,” says Beanland, “but try to imagine as far as possible what it might be like for them because going through that assessment process – if it is dementia, that is a life-changing diagnosis.” He also suggests not leaping ahead but taking one step at a time.
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There might be instances, though, when the person does not want to engage and can even become angry. Beanland says: “Doctors, nurses, psychologists and our own helpline can all help people understand and adjust to a diagnosis. Talking to someone can be really helpful in the long run.”
You are not alone
It’s really common for people supporting someone with dementia to not look after themselves as well as they should because they feel guilt if they put themselves first. There is help out there. Beanland says: “Reach out to people – can you ask a neighbour or your network of friends to help with shopping or errands? There are also support groups and online communities for carers. It can be quite isolating but don’t feel you have to deal with it alone. Carer burnout is a real issue.”
Most importantly, don’t forget…
With the right support, people can live well with dementia. Getting a diagnosis is the first step in unlocking that support when it is needed and it removes some of the uncertainty that the person and their family might be feeling. It can be what allows them to move forward with their life.
If you have been affected by dementia or Alzheimer’s disease you can call the National Dementia Helpline on 0300 222 11 22