Dementia patients ‘spending average of a month in hospital in last year of life’

People living with dementia are spending an average of a month in hospital in Wales in their last year of life following emergency admission, a terminal illness charity has found.

Data collected by Marie Curie revealed there were over 51,000 emergency admissions for people with any terminal condition in the last year of their life in Wales in 2016 – with further analysis revealing differences among patients with cancer or non-cancer diagnosis, and stark differences in particular for dementia patients.

The data shows that on average, patients in Wales living with dementia in the last year of life can spend 29.95 days in hospital, while people with lower respiratory conditions can spend an average of 14.86 days in hospital.  This compares with 7.10 and 6.21 days, respectively, in England.

Wales performs marginally better when patients with all non-cancer conditions are considered – with an average of 17.13 days spent in hospital, compared with 18.10 in England.

The data revealed such admissions costs the NHS an estimated £194 million, amounting to around 872,000 days in hospital.

The charity says that more innovative models of care in hospitals, along with better provision of high-quality care in the community, can help get people home from hospital quicker and keep them safe at home. In doing this someone will only get rushed to hospital when they absolutely need to be, resulting in a better quality of life and a much more effective use of already stretched NHS resources.

Simon Jones, Director of Policy and Public affairs at Marie Curie, said:

“Behind each emergency admission of someone approaching the end of life is a family in crisis. There’s a family whose loved one wants to be at home with the people they love, making the most of the time they have left. Tragically, this winter, many people will be taken to hospital when they don’t want or need to be there. This is how they will be spending their last Christmas.

“Many of the emergency admissions to hospital for these people could be avoided if high-quality care had been available to them in the community. Even worse is the fact that these patients will be known to their local health and social care professionals. The system knows them, knows what level of care they need but continues to let them down.”

He added: “What these figures tell us is that we need to focus hard on how to get people out of hospital following an emergency admission.

“Admission avoidance activity has been and will continue to be very important but the big prize, as these figures tell us, in terms of people’s quality of life and using hospital resource more efficiently is reducing the time people stay in hospital following an emergency admission, especially those with dementia.”

Joan’s story

When Claire Kingston’s mum, Joan Morgans, started feeling unwell in September 2017, a visit to her GP saw her immediately referred to hospital – where she waited 27 hours before getting a bed.

That admission was the first of five between September 2017 and March 2018 for the chronic heart failure.

“Every time she went in it was an emergency. She would become desperately, desperately breathless, and we’d have to get an ambulance and in she would go,” said Claire, of Penarth.

Following her final emergency admission in February, Joan was referred to the Marie Curie Hospice, Cardiff and the Vale in Penarth.

Joan was an inpatient at the hospice until July this year and since being discharged to her home in Penarth, has since had no emergency admissions to hospital.

During that time, Joan has been receiving support from the charity’s community nurse specialist team at home with symptom control and pain management.

“Now that mum is settled at home and not going in and out of hospital we have much more time to focus on being together and enjoying all the normal elements of family life,” added Claire.

“Her quality of life is much better, and she is much happier. The care she is receiving at home from her GP, the district nurses and the Marie Curie Community Nurse means that when her symptoms or breathing changes we can get the support we need without having to phone an ambulance and spending weeks in hospital when mum just wants to be at home.”

Joan added: “I’m so grateful for the care they gave.  It’s an excellent model of nursing care.”

Angela Dowson, Senior Nurse in the Marie Curie dementia service in West Wales, said there could be a number of challenges of being in hospital with a condition like dementia – including difficulty in communicating, a lack of understanding about what is happening and the disruption of being out of a regular routine.

“People with advanced dementia, and who will often have other chronic illnesses, are particularly affected by admissions to hospital,” she said.

“It disrupts their routine and can lead to them becoming much more confused, distressed and frightened.   We find that our sort of expertise can help families in working out what is the best interests of their loved ones which can help to avoid an emergency admission to hospital often with our Marie Curie nurses supporting them in their own homes.”