BIG READ: DIGNIFIED DINING

As the co-owner of a business that specialised in the supply of medical consumables and equipment to care homes, Jo Bonser thought she knew quite a lot about the care and dietary needs of older people. However, it wasn’t until her own mother was diagnosed with dementia in 2014 that Jo really started to appreciate the difficulties that carers face when looking after an elderly person who won’t eat. By 2016 Jo’s mother, Patricia Anne, who was always fondly known as Anne, had lost all interest in food and had consequently lost a lot of weight. 

“She was having falls and suffering from a constant round of chest and bladder infections,” remembers Jo, who was helping carers to look after her mother at home. She continues: “By that stage Mum was on end of life care and wasn’t expected to live for very long, which was devastating.” After deciding that she would do everything she could to help the woman she describes as her greatest inspiration and biggest supporter, Jo read all the information she could find about the dietary challenges of those living with dementia. She then used the findings of her research, combined with the clever strategies that she devised along the way, to reignite her mother’s interest in food. After a few months of patient coaxing, Anne began to eat again, her end of life care plan was abandoned and she lived for a further four, very happy years before dying on Mother’s Day 2020, two weeks after her 99th birthday. Although obviously sad at her mother’s passing, Jo takes great satisfaction in the fact that Anne enjoyed a good quality of life right up until the end.

Now, Jo is on a mission to help others living with dementia to live a similarly happy life for as long as possible. In order to pursue this quest, she sold her business earlier this year so that she can concentrate more fully on Dignified Dining, an enterprise that will enable her to pass on her knowledge and experience to other carers who are facing similar challenges, whether in a domestic or care home setting. 
She has already worked with some care homes, where her methods have been adopted with great success. So, what is the secret?  

Jo is unhesitating in her response. “It begins by treating everyone with dementia as the special person they are, with their own individual food preferences and dietary needs, rather than simply as another ‘dementia sufferer’”, she says firmly. And this stance was illustrated most effectively in the film that Jo made, which provoked tears when it was shown at the Care Home Catering Forum last June. 

It began with a carer peremptorily setting down a bowl of breakfast cereal in front of an elderly woman sitting alone at a table, without a word of greeting, explanation or providing a spoon. It then featured a selection of older people talking about their favourite foods and when, where and how they liked to eat them. What was particularly poignant was how often the foods they described were the ones that invoked nostalgic memories of long-gone childhoods, relatives and special occasions. It was very touching to see and hear one elderly man describing how eating an apple always reminded him of his brother and others describing the different dishes that always made their hearts sing. The film emphasised the fact that even when dementia has seemingly eradicated their ability for clear recollection, certain smells and tastes can still help people to recapture tantalising glimpses of happy occasions from their past. 

Jo believes that these moments should be treasured. “Dementia shouldn’t define the person; they are still there, and their needs should be honoured,” she says.

In the same way she believes that rather than having a meal simply placed in front of them, those living with dementia should always be allowed the luxury of choice.

“Choice is so important,” says Jo, who remembers an occasion when she and her sister took their mother out for a pub lunch.”  She recounts: “There was a carvery, but I decided that the roast dinner would be too much for Mum to handle and it would over face her, so I ordered her an omelette instead and she really wasn’t happy. So much so that she didn’t eat it. That taught me a very valuable lesson because I hadn’t consulted her or taken her wishes into account at all, and in fact, Mum would probably have been able to cope with a smaller and carefully selected plateful and she would have enjoyed it too!”

This incident also reminded Jo of the necessity of providing daintier portions and serving the food in a way that is easier to eat and swallow too. She continues: “As the dementia progressed, Mum had started listing to her right side, which meant that she was having to use her left hand to manipulate her cutlery – effectively she was having to relearn how to use her knife and fork.” 

Jo observes that this is where adapted cutlery is so useful, as is a plate with a special hot water compartment that helps keep food appetisingly warm. These are items that Jo’s former company sell, but they are freely available from many other outlets too, including Amazon. “Older people tend to eat at a slower pace than the rest of of us,” she says. “And there’s nothing worse than hot food that has gone cold!” 

Another important facet is providing a calm eating environment without noise or distractions. “When I started spending mealtimes with Mum, I removed all of the clutter, turned the TV off and tried to make it a social occasion so that we could chat and enjoy a quiet conversation together,” remembers Jo. “At first Mum would simply turn her face away, but very gradually, she started to eat her food and enjoy it again.”
The whole process took around three months, but then Anne started to regain the weight that she had lost and her general health significantly improved too. “The day that our community nurse told me that Mum no longer required palliative care, was the best day ever,” enthuses Jo. “It was the day that I got my mother back.”

Of course, caring for a much-loved parent in your own home is rather different from working in a care home, where many residents have an assortment of dietary and medical needs, but Jo maintains that the basic principals are still the same. She reiterated this at the workshop that she hosted during the recent NACC Training & Development Forum, where she explained in some detail the various changes that occur when someone has dementia.  

These include sensory and perceptual changes, which can result in diminished hunger and thirst and emotional and psychological changes, such as depression and anxiety that can lead to a resistance to care. Those living with dementia also experience social exchanges and their environment differently and can react negatively to any changes in their routine. Lastly, there are the physical changes they experience, which can be further exacerbated by medications that further reduce their appetite or cause them to feel nauseous, plus untreated dental problems that can also make eating more difficult. 

Then there is the added complication of dysphagia. As the dementia progresses many people with dementia will experience some level of swallowing difficulty and will thus require foods that have been modified in accordance with the commensurate level on the International Dysphagia Diet Standardisation Initiative (IDDSI) framework, which features seven different levels. Jo remembers the pre-IDDSI days when modified food was unappealing brown slop but agrees that things have changed for the better now, following the introduction of special moulds and thickeners that enable chefs to present more palatable puréed food that is a dead ringer for the real thing.

“The difficulty for carers, is that at mealtimes, all of these different issues can come together and make things quite difficult, especially when the carers are busy and many residents need extra help with eating,” says Jo. A common complaint from carers is that residents ‘refuse’ food, but Jo believes that often the ‘refusal’ might simply be that the resident doesn’t want the particular food that has been offered, but might select something different if given a choice.  

She cautions that when carers report ‘challenging behaviour’, they should be aware that this is often a symptom of a particular feeling or an unmet need that can’t be properly articulated. She says: “It’s important for carers to use positive language around those with dementia as any negativity can be very anxiety- inducing.” 

She goes on to add that the same applies to meal timings. In common with most of us, those with dementia want to eat when they feel hungry, not necessarily just because the clock says it’s mealtime.  “It’s pointless trying to coax someone who already has a meagre appetite to eat if they’re just not hungry,” she says and suggests that it’s far better to have an easy-to-eat snack available for them to have when they eventually do feel hunger pangs. 

Ambience is also a very important part of the overall dining experience. Jo is aware that some care homes already offer a choice of dining rooms; a more convivial one for those who enjoy social intercourse while they dine and another more tranquil space for those with dementia.
She understands that this isn’t always possible but urges care homes to consider how they can make the available space more dementia-friendly, by reducing the level of noise and visual distractions that could lead to over-stimulation. She feels this is especially important for those whose mobility or other issues mean that it will take them longer to finish their meal.

Jo’s work with care homes thus far has involved her making an initial visit and carrying out an audit of the mealtime service, before providing recommendations for improvement and although it’s a part of her work that she relishes, she realises that it necessarily limits the scope of her activities.  Accordingly, she is currently working on the production of an online version, which will allow many more people to easily access her help and advice at a place and time of their own choosing. Many of the videos she is making will feature the workshop format that Jo introduced at the NACC and are designed to initiate discussions and an exchange of ideas between all those who view them.

It was great to spend quality t-ime with Mum during her last few years and to be able to make so many happy memories,” says Jo. She particularly recalls a joyful visit to a pantomime. “Mum had always loved the pantomime as a child and really enjoyed taking her own children too. I found one that offered accessible performances, which are much more relaxed as they are specially designed to suit the needs of those with autism, ADHD, dementia and other sensory deficits. Mum absolutely loved it, and it was wonderful to witness her enjoyment. I want all of those with dementia to have a similar opportunity to get the most out of their lives and I hope that Dignified Dining will help me to achieve it.”

And you can’t say fairer than that. 

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