When a person’s dementia seems less advanced than it is because they’re in ‘host mode’

Readers share advice about professionals not understanding someone’s symptoms of dementia because the person is masking how advanced these are.

We asked members of Dementia Support Forum and magazine readers for their advice about someone being in ‘host mode’ at health appointments. 

Dementia Support Forum is a helpful community that’s free and open 24/7, where anyone who’s affected by dementia can get valuable support online.

CLS1970 says,

‘The consultant came out to start the initial assessment and my mum told him she is capable of looking after herself and does everything herself. 

Luckily there are case records which indicate she isn’t able to do anything for herself, along with confusion, incontinence, no memory recall, lost all interests in everything and has many different personalities and chants. 

‘The consultant was well aware of the host mode my mother was displaying and presenting with.’

Canna says,

‘I learned to put my concerns in writing and send them in ahead of any appointment. The first thing I’d say was that Mum was very good at hiding her problems and could talk a good talk – that she would say that there was nothing wrong. Then I’d give a bullet point list of things I was concerned about with examples of incidents that had concerned me. 

It was also useful to think ahead about what I wanted the GP or social worker to know, so that I didn’t forget anything important when we met (my mind always goes blank when they ask, “Is there anything you’d like to add?”). 

‘At the appointment, I’d try and sit out of Mum’s sightline so that I could raise my eyebrows, shake my head or pull a face if she was saying something that wasn’t correct. 

‘After the appointment I’d try and linger behind, or catch the person on the doorstep to correct as much as I could. If necessary, I’d also send a follow up email to explain that although mum had said x, actually y was happening.’

SkyeD says,

‘I kept a diary of just about everything, and intended to show it to any health or social care professionals when Mum was in host mode.

‘Fortunately, I never needed to use it because the professionals saw straight through Mum’s answers (the sort of, “Yes, of course I can do washing / cleaning / cooking / answer a telephone / get around my home / organise and take my medications / get washed / dressed etc” when clearly she couldn’t do any of those things). 

Several telephone conversations with me prior to each appointment also helped.

‘Luckily it was the professionals who made contact with me for an idea of what Mum was like, what she could or couldn’t do, before the appointments.’

Splatty says,

‘My husband believes he can do everything that he has done before in his life.

Friends are amazed at times how he welcomes them and appears very normal.

‘He has been in hospital recently. This was extremely difficult as it was very evident that the nurses and even some of the medical staff did not realise that he wouldn’t remember what he was told.’

BluTinks says,

‘Wow my mum was brilliant at this! So much so that memory clinic believed she had MCI and could do everything, when in fact she wasn’t able to make a cup of tea or put a sandwich together.

‘In the end, I had to take her privately to a neurologist for diagnosis before anyone would listen to me.’

Andbreathe says,

‘When the care team leader came to visit Mum at home as part of the care package, I showed her out and took the opportunity to ask whether she had heard of hostess mode.

‘When she said yes, I said, “You’ve just had a good example of it.”’

Your turn: From a distance 

Do you have advice for someone who’s struggling to support a person with dementia who lives far away and refuses their help?

If so, email us at [email protected] by the end of 4 January 2024. 

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Dementia together magazine

Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
Subscribe now