Managing the ‘long goodbye’
Dementia robs us of our loved ones a piece at a time, but there are ways to cope, finds out
losing someone you love to Alzheimer’s disease is a devastating experience.
Often referred to as the ‘long goodbye’, it’s the most common cause of dementia in the UK and impacts brain function, memory, thinking skills and other mental abilities, slowly taking away the things that define who we are.
So what should those caring for someone with the disease be prepared for, and how can we help loved ones as their symptoms progress?
STOLEN MEMORIES
“Common delusions include believing someone is stealing or that people are trying to harm them,” says Dr Tim Beanland, head of knowledge at Alzheimer’s Society.
“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.
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?”
“Memory loss 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 helpSLOWLY ful 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.”
TIME TROUBLE
“As daylight starts earlier and ends 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 has day and night visual symbols to help distinguish the time of day.
HOBBY HUMILIATION
“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.”
Dr Beanland adds: “Support them to re-engage 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: “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.”