Sunday 24 June 2018

'I'm telling my story because there might be elderly people in hospital quite literally going without food' - concern for dementia patients

Age Well Part 2: For those suffering from dementia or spending a long period in hospital, it can be difficult to ensure they are getting the right food - and enough of it - to ensure a full recovery. A new campaign aims to ensure patients are getting what they need

Helen Moore, pictured with a photo of her late mum Peg. Photo: Caroline Quinn
Helen Moore, pictured with a photo of her late mum Peg. Photo: Caroline Quinn

Áilín Quinlan

When Helen Moore's mum was admitted to hospital, the last thing Helen expected was that the frail pensioner would go hungry.

However, when Helen, who is in her fifties, asked hospital staff whether her 92-year-old mother Margaret, known affectionately as Peg, was eating, she was concerned to discover that she wasn't.

Peg - who had dementia and kidney function issues and was being treated for breast cancer - was brought to hospital by ambulance from the family home in Broadstone, Dublin 7 on September 26 last, after discovering she was unable to stand.

"Mum had a bad shake in her hands and needed help with eating and drinking," recalls Helen, managing editor of the Irish Journal of Medical Science.

The following day when Helen visited, she checked with hospital staff about whether her mother had eaten breakfast.

"I was told that she had been offered it but didn't want it. You don't ask a person with dementia if they want to eat - you just feed them! But they had not fed her," says Helen, who came back at lunchtime and fed her mother herself.

During the four weeks Peg was in hospital, until she passed away on October 21, Helen regularly left work to make sure Peg ate a dinner at lunchtime and ate again at teatime.

"I would go up as often as I could, and in the evening I'd come back up with tea and a cake for her," she says, adding, "she became dehydrated and was put on a drip, essentially because no one was available to hold a cup to her mouth and ensure she drank anything.

"I noticed that food was being put in front of elderly patients, left for 20 minutes or so and then taken away," says Helen, who explains that a busy healthcare assistant moved from one patient to the next, trying to help them eat.

"However, she had three or four patients to feed in different wards and she moved from one to the other and didn't get to sit with any patient for any length of time.

"She would put milk in my mother's tea and start her off with a spoon of meat and one of mash and then move to the next patient, promising to come back, but within 20 minutes the food tray would have been removed from my mother's bed.

"I asked why the tray was taken away so quickly. I was told that food becomes contaminated if it is left lying around," says Helen, who believes that if she had not made a point of visiting her mother around mealtimes, she would not have been fed.

"They simply don't have the time. I believe this is happening in all hospitals because of low staffing levels and it's going unnoticed," says Helen, adding, "the food isn't great either. There's a lot of stodge and very little protein."

She believes many hospital staff don't fully understand the needs of dementia patients.

"They don't seem to have any idea how to make sure they were fed," she worries. "I'm telling my story because there might be elderly people in hospital without relatives looking out for them, and they may be quite literally going without food.

"I believe malnutrition might be very prevalent in the hospital setting and nobody is noticing."

Everyone who has dementia is different, explains Tina Leonard, head of advocacy and public affairs with the Alzheimer Society of Ireland.

"Some people can struggle to eat enough throughout the day to meet their nutritional requirements, while others may forget to eat, thinking they have already eaten, or struggle to finish a meal. This can all become more challenging as dementia progresses," she says.

"People with dementia do not always find adjustment easy - particularly when in hospital with an illness.

"They can forget where they are and why they are actually in hospital. As you can imagine, this can be a very distressing and frightening experience.

"For this reason, it is very important that dementia-friendly environments are created in hospitals to ensure people with dementia are eating properly while they are in hospitals."

There is a problem, acknowledges Professor Dermot Power, a consultant at the Mater Hospital, specialist in geriatric medicine, and president of the Royal Academy of Medicine in Ireland - and he's decided to tackle it with a just-launched campaign.

The social media campaign #Dinnertime is about raising awareness of the need to give older patients in the hospital setting, particularly those with dementia, sufficient time and attention to ensure they achieve a good food intake.

"The aim is to increase an awareness of the amount of time and attention that elderly patients need in hospital to ensure they eat sufficiently," says Prof Power, adding that insufficient food intake in the hospital setting is a problem primarily associated with dementia patients.

"It happens because patients with cognition problems are not able to manage and, from personal observation of the day-to-day reality on the wards, we are seeing that while food can be adequate in terms of content and temperature, it's being put in front of patients who may not have either the energy or the cognitive ability to feed themselves.

"Meal trays are being put in front of people who do not have the cognition or the physical capacity to feed themselves so the food is going cold," Prof Power says.

"Staff are often busy doing other tasks and meals are not being eaten.

"What happens to patients in this situation is that their recovery is affected. They can become malnourished and dehydrated, which prolongs their recovery time and their stay in hospital.

"Our hospitals need to become more dementia-friendly, and all staff should have a basic understanding of the needs of dementia," he adds. "They should understand that these patients may lack the insight to know whether they're hungry or be aware that they haven't eaten.

"They need to understand that they are not dealing with someone who is fully in control of their situation and that staff need to observe and assist. People with dementia need to be encouraged and facilitated."

However, says Prof Power, hospitals have become increasingly aware of the problem, and there has been a move to bring those patients with higher needs together in a dedicated environment.

Dementia-friendly initiatives have been carried out in hospitals such as Mercy University Hospital in Cork as part of the Cork IDEAS project which was an initiative to improve and integrate dementia care in the hospital and the community. Connolly Hospital in Blanchardstown has also undertaken a Dementia Pathways Project for people with dementia availing of acute services.

"These projects have proved very successful and other hospitals in Ireland should be encouraged to emulate the success of these initiatives to ensure that care for people with dementia in hospitals is always person-centred," says Ms Leonard.

However, Prof Power does not believe there are enough of these facilities available in the Irish hospital network as a whole.

"I don't think the resources are being put into this," he says, pointing out that such facilities would inevitably have a higher requirement for staff, so they are more expensive to run.

Families also need to be aware of this potential problem, he adds.

"There is a lot of lip service paid to the management of old people in hospital but we need to focus on a specific issue like this, which is not about medication management or waiting lists or people on trolleys. This is a relatively simple problem which is about helping people to eat correctly, but the process of addressing it requires extra investment in staff."

* The 'Eating Well with Dementia' booklet is now available from The Alzheimer Society of Ireland - call the Alzheimer National Helpline on 1800 341 341, email helpline@alzheimer.ie, go to alzheimer.ie, or check your GP surgery.

The facts

• The majority of people living with dementia in Ireland are struggling to eat properly, according to research carried out for the Alzheimer Society of Ireland on the relationship between nutrition and the condition.

• The research reveals that 58pc of those surveyed forget, 54pc forget they have eaten and eat again, 51pc find it difficult to finish meals and 36pc feel they are too tired to eat.

• The study found that a majority of survey respondents reported a change in their sense of taste (59pc), smell (56pc) and thirst (52pc). Some 56pc reported greater difficulties chewing, while 44pc encountered difficulty swallowing food.

• The research also highlighted challenges with shopping and cooking. More than 80pc reported that it could be difficult to get to the shops for food, 88pc found shopping confusing.

Tips to help make mealtimes easier for dementia sufferers include:

* Keep the table setting simple

* Establish a routine

* Distinguish food from plate

* Company at mealtimes

* Familiarity is important

* Be flexible around food choices

* Allow sufficient time

* Be flexible to food preferences

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