Letting go, not giving up, in late stage dementia

In late stage dementia most people will begin to require additional support and assistance. Caring for someone at this stage of dementia can be a profound experience.

In late stage dementia, people become frail, and the damage to their brain is to such an extent that they can no longer perform most tasks.

While of course we wish the best for our loved one as they deteriorate, and, if caring for them, we do all we can to support them, dementia expert Teepa Snow says we can also reassure the person it’s alright to go, and to “let them go”.

What happens in late stages dementia?

Common symptoms of late stage dementia include:

• Significant memory loss, for example, they may not be able to recognise everyday objects.
• To them they believe they are living in the past.
• Speech becomes difficult.
• They lose the ability to walk.
• They need help and encouragement to eat and drink.

How can we help in late stage dementia?

• Memory loss in late stage dementia means people may feel vulnerable and uncertain. It’s important to reassure them, and provide a calm, reassuring environment.
• Keep up engagement. The person may experience moments of recognition and connection, so it’s important to be there, if you can, when they do. When people stop eating and drinking, sometimes they have a surge of adrenaline that can make them more alert.
• Be alert to them trying to communicate through expressions, body language, and emotions if they have lost the ability to speak.
• Talk to the person about their past, particularly if they believe they are in an earlier period of their life. Talk about their photos, or their memories, or discuss an interest you know they have.

• Chewing may become difficult, so food and drink textures may need to be adjusted.
• Encourage the person to keep eating as much as they are comfortable with. Where possible, give them food you know they enjoy. Small snacks may be more manageable that complete meals.
• Food supplements may be considered if it’s difficult to get the person to eat.
• Gentle touch can be pleasant and reassuring from someone in late stage dementia.

Letting go

Letting go of someone with late stage dementia is different to giving up on them, says Ms Snow in her video, ‘Alzheimer’s: Letting go at the End of the Disease’.

If you are letting them go, you are reassuring the person that you will be alright and not to worry if they want to go.

Giving up is when you no longer know what to do.

“I would encourage you, if you get a moment where you feel like you can, to say if you need to go home, you go,” she says.

“People may bounce back, and sometimes they go – because they were waiting for your permission.”