They call it the long goodbye – the devastating experience of slowly losing someone you love to Alzheimer’s disease. As the most common cause of dementia in the UK, Alzheimer’s impacts brain function, memory, thinking skills and other mental abilities, slowly taking away the things that define who we are.
“Over time, those living with the disease begin to forget family and friends, can become delusional or lose interest in pastimes they once adored,” says Dr Tim Beanland, head of knowledge at Alzheimer’s Society.
“Each time, it can feel like part of them has died, even though they are still physically in your life. That’s why we say that with dementia you don’t just die once, you die again and again and again.”
So what should those caring for someone with the disease be prepared for, and how can we help loved ones as their symptoms progress?
Springing forwards can be a step backwards: When the clocks go forwards for spring, people with Alzheimer’s may struggle.
“As daylight begins to start earlier and end later, people with dementia may struggle to differentiate between 6am and 6pm,” says Dr Beanland.
“This can disrupt their circadian rhythm and make it harder for them to get enough sleep. Not feeling ready to sleep because it is light outside can leave them overtired, which can cause low mood, irritability and affect their ability to think clearly.
“Having a routine during the day and at bedtime can help regulate a person’s disrupted body clock, and getting outside for gentle exercise can help them feel tired at bedtime.”
Alzheimer’s Society’s online shop sells a Day and Night clock (£32.99; alzheimers.org.uk/shop) which includes day and night visual symbols to help distinguish the time of day.
Stolen memories: Delusions, suspicions and paranoia are sadly not uncommon when a person has dementia.
“Common delusions include believing someone is stealing or that people are trying to harm them,” says Dr Beanland. “Someone with dementia may be unable to put bits of information and memories together correctly, which can lead them to draw false conclusions and believe something that isn’t true.”
However, it’s important to remember that, for a person experiencing a delusion, their reality is as true for them as your own.
“It is natural for you to feel upset and want to correct them,” he adds. “However, as dementia progresses, accepting logic and rational persuasion become difficult, so it is often impossible to convince a person who is delusional of the truth. Trying to do so is more likely to cause them distress.”
There are ways to support a person who is having delusions:
■ Encourage them to talk through their thoughts.
■ Acknowledge their distress and how they must be feeling, and reassure them that their concerns are being taken seriously.
■ Try to gently offer an alternative explanation for what may have happened, and present this as another possibility alongside their delusion, rather than an opposing view, gently shifting the person’s focus.
“Who are you?”: People often say that the first time a loved one forgot their name or relationship to them, it hit them hard. “Memory loss, particularly of such a personal nature, can be a distressing part of dementia, both for the person with the condition and those around them,” says Dr Beanland.
“Reminding yourself that the person’s difficulties are because of their illness may help you to deal with these emotions. It can also be helpful to casually mention your name when you say hello.
“Life story work, which involves making a personal record of important experiences, people and places in their life, can also help.”
Hobby humiliation: A loved one who was a skilled baker or keen DIYer might begin to drift away from their former passions.
“For some people with dementia, many tasks they were able to do with ease need a lot more effort than they used to, making them tedious, frustrating and sometimes even humiliating,” explains Dr Beanland.
“They may no longer wish to try, or they might experience apathy as part of their condition. This makes it harder to help then get back to being active and engaged with others.”
There are many things you can do to encourage a person to stay motivated and engaged. Dr Beanland adds, “Be encouraging and positive and support them to reengage by adapting their hobbies to their new skill level or help them find new hobbies.”
Party animal to wallflower: People who were once the life and soul of any party can slowly become withdrawn and stop taking part in activities and even conversations.
Dr Beanland says, “This can sometimes happen when someone with dementia begins to find certain things more difficult, like keeping track of what everyone is saying. They may also find the stimulation of being in noisy, crowded rooms distressing.
“Create opportunities to take part in less stimulating activities, such as one-on-one visits or using the internet to keep in touch with friends.”
With dementia you don’t just die once, you die again and again. That’s why Alzheimer’s Society will be there for people again and again. For more information or to donate, visit alzheimers.org.uk
