Sunday, 26 May 2013

Part 1: Acute care and dementia………

As we know there is much written about the devastating effect hospitals can have on those with dementia including increased confusion, malnutrition and in some cases death.  This is the first of 3 blogs on my experiences of acute care whilst my dad was in hospital.

 Last year my dad was admitted to an acute hospital with pneumonia. Sadly during his time with dementia (7 years) we had struggled to access care and support within the community in particular the last year of his life, when in fact his needs had become more complex and he would have benefited from advance care planning and input from a co-ordinated and integrated team. Because of a lack of capacity and capability within the community services to provide more intensive care in the home environment our only option was to have dad admitted to hospital.

Dad was very frail he needed 24 hour care, was unable to communicate his needs, bed ridden, incontinent and unaware of the need to eat or drink. Dementia has a devastating effect on the brain which I don’t think many people realise, not only does it rob an individual of their memory, as it progresses they lose the ability to talk, walk, eat or drink. They don’t understand commands and find the world around them frightening and confusing.

Imagine my dad then who had received 1:1 care provided at home by my mother admitted to a busy acute medical ward where 1 registered nurse was responsible for 12 acute medical patients with an HCA to share between 24 patients. It doesn’t take a rocket scientist to realise that an elderly frail person with dementia is likely to deteriate quickly if one nurse is responsible for 12 other elderly frail patients. As many of you will know I am a nurse myself and I know that I could never give the level of person centred care needed if I was responsible for 12 other ill patients. Acute medicine is a busy area for any health care professional to work, many patients have complex needs and I know many nurses will finish at the end of their shift knowing they have not delivered the care they would wish to give their patients. It is these nurses that I urge you to speak out to your managers, please do not accept that you have to work in these conditions. Ask yourself how you would feel if it was your loved one lying in that bed, helpless, vulnerable, unable to use the call bell, or articulate their needs.

I often used to liken dad to a young baby, although I feel very sad to have to think of it like that. For dad needed to same level of care as a baby did. He wore incontinence pads that looked like nappies, he needed changing and cream applied on his bottom as you would do for your baby. His food was pureed and he needed feeding otherwise he would have died of malnutrition and dehydration. He could not be left on his own and in the last year of his life became bed bound. So can I ask, would you feel it acceptable to have 1 nurse look after 12 young sick babies on the ward? No you wouldn’t and we have minimum staffing levels for paediatrics, midwifery and ITU so why do we not for frail elderly or vulnerable patients. You might argue that on the children’s wards parents help with the caring and yes many do, however the elderly and vulnerable are not as lucky. Many do not have family or carers to look after them, there are completely reliant on the need of the nursing staff to provide that round the clock care.

So it would come as no surprise to you then to hear that dad often did not get his pads changed all day or turned to prevent pressure sores. He was on an air mattress; however this does not alone provide adequate prevention in skin break down.  Because of this his skin in his groins became very sore and mum found this very distressing to see as dads skin had always been perfect before he came in to hospital. For mum the only solution to ensure my dad got the level of care he needed was to come in every day for 9 hours which she did every day for 9 weeks. She knew that there were not enough nurses to ensure dad was fed, changed or offered drinks to keep him hydrated. She was given the nick name matron by the other patients as she became part of the fixtures and fittings of the 6 bedded bay.  She took it upon herself to look out for the interest of the other patients, often going to find a nurse if one of the patients was trying to get out of bed or reassuring someone who appeared upset or distressed. It became very obvious very quickly that there were not enough staff to care for the complexity of care needs for these patients, many had dementia and I can now see why many deteriated so quickly once in hospital.

Dad had been suffering with recurrent chest infections prior to his admission however it needed my mum to ask the staff if he could be referred to speak and language therapy (SALT) as we were aware that his swallow could be the cause of the recurrent cough and chest infections. It took 6 days from the original request for him to be seen. His swallow was the problem and he was commenced on thickener for his drinks and pureed food.  Have you ever seen the pureed food that comes pre packed in plastic containers like the food served on a plane? Well the only thing this food had in common with the plane food was the packaging! It was the most unappetising meal I have ever seen which was compounded by the fact it was served in the plastic container. For someone who is elderly and frail with loss of appetite presentation of food is so important. It may have been high in nutritional content however the look and sight of it would put off the most hardened ready meal fan!

As we know weight loss in dementia is very common especially as the disease progresses, for anyone ill in a hospital we should consider the appearance and taste of our food. Why do so many hospitals now have food brought in and reheated in the microwave? Why have they shut down their kitchens and stopped preparing fresh appetising food? I visited a hospice last week where the chef told me he cooks food to order for the patients that are not feeling well enough at meal times but might fancy something later in the day. I know hospices are smaller and have less numbers to cater for but why can’t we provide that for our patients in acute hospitals? Something we need to think about!

Staffing levels is the elephant in the room at the moment, that’s why I was so pleased to read the article this week in the nursing times by Trish Morris- Thompson on mandatory staffing levels and the formation of the Safe Staffing alliance.  As she says “To Provide safe, high-quality care it is clear there is a need for mandatory staffing levels” I am totally behind you Trish and urge other nurses whatever grade to get behind this campaign, we owe it to our patients and we owe it to ourselves.

In next week’s blog I  will cover my experience of the continuing health care funding process within acute care and the devastating effect it had on both myself and my mother, until next week………. Thank you for listening





  1. My sister and I endured a very similar situation when our dearly beloved Mum, Jean, was admitted to hospital with pneumonia. I have healthcare professional experience and spent time with the ward staff documenting Mum's needs and making sure they knew exactly what she needed, leaving clear written instructions, as she was unable to communicate. My sister and I negotiated compassionate leave from work and took it in shifts to ensure Mum was fed, hydrated and kept company (providing her with her memory box complete with her treasured items) during the long hours of her stay there - this was extremely tough to arrange as I lived an 80 mile round trip from Mum..
    Sometimes I think families need to be flexible and resilient during this time too - it's very difficult for nursing staff who don't always have the authority to make changes and are aware of their inability to provide adequate care to the numbers of patients.
    In our case, the staff were completely relieved that we could spend time with Mum, releasing time for them to care for the others. Not ideal, but it worked for us - at the time.
    Mum recovered and went on to enjoy 10 more months of being cared for and adored by her loving family until she passed away 18 months ago. We all miss her every day, but always feel privileged to have been part of her care and to have been with her on every step of the journey through dementia.

  2. Sally-Ann, what a powerful and moving blog. I came to it late via Gill Phillips. One sentence in particular hooked me, "For mum the only solution to ensure my dad got the level of care he needed was to come in every day for 9 hours which she did every day for 9 weeks". What an extraordinary woman. My mum had dementia for the last 10 or so years of her life and your descriptions of your dad brought it all back: the sparrow-like body, the baby-like needs and the challenges they bring, the sadness and frustration. All good wishes to you.