Dementia: “I Fear Hospital not Death”

Tommy Dunne, aged 65, has Alzheimer’s disease and was diagnosed in 2011. He says that he ‘dreads going to hospital.’

“I feel if I go into hospital, I’m not coming back out. And that’s not through dying. I’m terrified that the nurses and the staff won’t have had any training with dementia.”

Full BBC video report here.

A report by Cardiff University says that hospitals frequently do not provide the care that dementia patients need and says that staff on the frontline need more training, support, and new ways to care for people with dementia.

Photo Credit: NHS Wales

Our founder’s Mother was recently admitted to hospital with a life-threatening infection. We ask Emily a few questions about her experience of witnessing someone with dementia in an NHS hospital here:

Your mother was recently in the hospital; could you tell us about that?

Mum was rushed to hospital after nursing home staff, where she lives, found that she was unwell, running a fever and suffering from vomiting and diarrhoea. Upon arrival at the hospital, she was diagnosed with sepsis (blood poisoning) which it transpired occurred due to an untreated (unnoticed) urine infection.

Were the staff at the hospital dementia trained?

When Mum was in A&E and later Emergency Resuscitation they were very attentive. However, once she was moved to a ward (and later another ward) which was a frailty ward, no they weren’t.

If treatment was needed, did the staff explain it to you clearly?

Doctors in A&E were very good. The care was attentive, and explanations were thorough. On the ward, this did not match up.

Were your Mother’s care needs (if any) met? If not, why/how not?

On the frailty ward, there was a lack of understanding of dementia care.

This was split into two separate sections. Communicating and Handling and Hygiene and Manoeuvring. I explain further below:

Communicating and Handling

• Once on the ward, carers who were turning my Mother (as she has a healing bed sore), would approach without any forewarning. On one occasion I witnessed two members of staff rush in and begin to recline the bed to turn her, without alerting her to this first. She was facing away from them, on her side, with her back to the door.
• Staff came in and started to recline the bed without telling her. She couldn’t see and started to scream (fearing she was falling backwards). As the family were there with her on the side she was facing, we were able to reassure her but there was no approach of calmness and explanation at eye level from staff.
• There was no communication stating to her face “we are just going to recline you now and lay you flat, so we can turn you, ok Joan.” This is how anyone in care should be approached and spoken to. Otherwise, anyone in bed doesn’t know what’s about to happen. Imagine if you were in bed and two people came in and reclined your bed then grabbed hold of you, you wouldn’t know what was about to happen!

Hygiene and Manoeuvring

• Despite my Mother’s nursing home sending her to the hospital with her medical notes, these were later disregarded on the ward. Mum was transferred to a ward at around 11am by 12 a TVN – Tissue Viability Nurse came to assess Mum’s sore. This is standard. The notes reflect the state of sore and how a patient should, therefore, be cared for owing to this. The family repeatedly told staff as well that as Mum has a very bad sacral sore on the sacrum (lower back) she must be laid on her side at all times.
• I visited at 8pm the same evening (8 hours after the TVN had conducted the assessment and given notes to the ward sister.) At 8pm, I found Mum sitting back in bed, full weight on the sore and covered in her own mess. The diarrhoea was still present, although she was stable enough to be on a ward. She had not been checked so the mess was all over her, the bed and on her cannula (drip) on her hand.
• I asked the ward sister about all of this and she looked at the notes. Despite having been given these 8 hours earlier, no one had read them.

Mum was in the hospital for 9 days and we often found her either on her back or not fully on her side.

We did each time ask for her to be turned as anyone who knows about bedsores knows: you never lay the person with pressure on the sore in question. To heal, it has to be totally free from further pressure, kept clean and further medication may need to be applied (antibiotics, pain relief, cream etc).

Of course, in dementia, a person can’t vocalise their needs as you or I would. If she’s in pain, she can’t communicate that and if she should be laid on her side, she can’t communicate that either.

Photo Credit: A Dementia Friendly Ward in Beaconsfield, East Ward

Did the staff treat you and your mother with dignity?

I found the staff, for the most part, to be caring but busy. I think that’s the case for the whole of the NHS! ‘Overworked and underpaid’ is something you hear often.

The doctors were very attentive, as previously mentioned, within an hour of Mum arriving at the hospital an air mattress and recliner bed arrived. She was placed on her side in A&E and the sores were assessed by doctors. Anyone in bed for prolonged periods or who is elderly with fragile skin should be in a reclining bed, turned regularly and placed on an air mattress to prevent bed sores. In 2018, no one should develop a bed sore. Within 3 hours of arriving at the hospital blood tests were back, sepsis had been identified and two antibiotics were administered to save her life. Sepsis if untreated is fatal.

I do think that NHS care staff lack dementia training.

On the last day that Mum was in the hospital (9 days after she was admitted), we visited and found her on her back. I spoke with the ward sister, who said she was about to have lunch. I explained again that even to eat, she must be upright (raising the bed to an upright position) but still on her side, not her back. I had even made a sign to remind staff on interchangeable rotas what care needs Mum had! When I told the ward sister, she did then turn Mum to her side.

However, constant monitoring was required. We were there every day for several hours, we took in dementia aids, toys, a portable DVD player and films, the right feeding spoons, dementia drinking aids (cups) and constantly reminded staff about positioning, turning and cream but not every family is able to do that. I could easily see how someone could fall by the wayside as it were in hospital that has dementia.

Photo Credit: BBC

I saw the wrong approach toward someone with dementia, yes, simple signs which can be really frightening to someone who does have dementia and very easily rectified from our point of view. A few of these common errors I list below.

The following was absent from some but not all staff in the NHS:

• Approaching with calm and a smile (In the shoes of someone with dementia, if you can’t understand someone but you can see a vacant expression, you’re going to assume the worst.)
• Approaching someone at their height and in front of them. Always kneel or crouch to talk to someone on eye level if they’re in a wheelchair or bed. Standing over someone and looking down on them can feel threatening. Approaching someone from behind them is scary!
• Introducing yourself with a ‘hello’ and your name and telling the person what you are about to do before you do it. Even if it is reclining the bed. You know what’s about to happen but the person in the bed doesn’t. Whether someone can respond or not is irrelevant. They will likely still understand you. Regardless even of this, anyone on any cognitive level will have the sensation of falling backwards, even a new-born. We all know that feeling and it’s not pleasant.
• Reassurance if someone panics. If after explaining to a patient what you’re going to do, they become anxious anyway, reassure them by telling them calmly they’re ok “you’re ok, you’re ok” will usually suffice and a smile.
• Smiles always reassure people. This is a non-verbal way of saying ‘everything is ok.’

A recent update to the matter with my Mother I would add: 

Since arriving back at Bupa, (her Nursing Home), she has been assessed by a Bupa Nurse and it has been found that she has a). lost weight since being with the NHS for 9 days and that b). her sore Did in fact get worse. The latter doesn’t surprise me, as we often found her on her back or not correctly positioned on her side, as I say.

Any care professional knows that bed sores are to be dealt with correctly to heal and prevent other nasty infections occurring It’s a simple process of not placing someone directly on the sore, even to eat, hence a manoeuvrable bed. An upright position can be achieved, while still keeping the person on their side (if the sore is on their back). Care such as this is so simple, it’s disappointing that the NHS can’t get such simple things right.

Photo Credit: Gov Logo

The Department of Health and Social Care says on the matter: “We expect everyone with dementia to be treated with the respect and dignity they deserve. That’s why we invested £50m to make hospitals and care homes dementia friendly.

“More than 875,000 NHS staff have undertaken awareness raising activities, and we continue to support trusts to sign up to the Dementia Action Alliance’s Dementia Friendly Hospital Charter.”

It also says that it aims to: make England the best place in the world to live for people with dementia.

Featured Image: Wiki Clip Art 

Writer: Marsha Turner