5 Things People With Alzheimer's Disease Want You To Know, According To Dementia Expert

'Their biggest fear is losing their personality.'

When a loved one is diagnosed with Alzheimer’s disease, it can be difficult to know how is best to support them.

That’s why Bupa’s global director for dementia care, Graham Stokes, has revealed the five stand-out things that people with the disease told him over the course of his 30-year career.

“For many people living with Alzheimer’s disease, their biggest fear is losing their personality,” he told HuffPost UK.

“To support someone with Alzheimer’s there are things we can all do to help them be at their best.”


Here are five things people living with Alzheimer’s want you to know, according to Stokes.

1. ‘I am still the same person I’ve always been.’

“People with Alzheimer’s still have the same likes and dislikes as they did before their diagnosis,” said Stokes.

“For most people living with Alzheimer’s it’s so important to them not to be defined by their condition, rather they should be defined for the person they have always been. They have the same sense of humour, value the same things in life and want to be treated like they always have been.

“Over time as their condition advances, you will notice changes in their behaviour, they will become more forgetful or possibly distant, but it’s important to focus on the things that make them who they are. For example, if they like jazz music, listen to their favourite songs with them, or if they enjoy gardening, go out and sow some seeds.”

2. ‘I can live well with Alzheimer’s.’

Stokes continued: “Staying physically and socially active is really key to ensuring the wellbeing of a person living with Alzheimer’s. Seeing people socially and staying involved can prevent someone becoming isolated and depressed. Regular exercise can help to keep them fit, but may also help them to form good sleeping habits so they – and their carers – are more rested.

“While staying physically and socially active can be beneficial, it’s important not to force it. It’s important to let the person with Alzheimer’s be who they have always been. So, if the person living with Alzheimer’s has always been introverted, the person who’s caring for them will need to balance the benefits of social activity with the fact they may find it quite distressing to suddenly change their social habits.”

3. ‘Focus on what I can do rather than what I can’t.’

“For people living with Alzheimer’s disease, the focus is usually on what they can’t do rather than what they can do,” Stokes said.

“They may stop being asked to babysit their grandchildren or do the little things like make a cup of tea when there is no good reason. This can feel disempowering, especially if they’re still able to do these things.

“There will be things that are challenging for a person living with Alzheimer’s,
especially as the disease progresses, but it’s important to focus on the things they can do and support them with the things they can’t.”

4. ‘I can still have meaningful relationships – don’t be shy around me.’

“During the early stages of Alzheimer’s, people are still able to communicate as they did before their diagnosis,” Stokes said. “As the condition progresses, their ability to communicate becomes more difficult. However they can still show emotion and affection, so you’ll still be able to have a laugh together, or share a heartwarming moment.

“Just make sure you keep your conversation with the person simple: instead of saying ‘would you like to go outside or stay in today’ just say ‘would you like to go outside?’”

5. ‘I still need companionship, even if I don’t remember that you’ve been here with me.’

“If the person is in the later stages of Alzheimer’s, they may not remember you visited them or know who you are - but in the moment you’re with them, they are able to enjoy your company,” Stokes explained.

“From birth, we seek companionship. Although the person with Alzheimer’s may forget that they saw you, that feeling of companionship can stay with them throughout the day.”