Dying with dementia – we need to measure more than the place of death

Katherine Sleeman is an NIHR Clinician Scientist and Honorary Consultant in Palliative Medicine at the Cicely Saunders Institute, King’s College London. In this blog she discusses her paper Predictors of emergency department attendance by people with dementia in their last year of life: Retrospective cohort study using linked clinical and administrative data. She tweets @kesleeman

Over the past decade there has been a strong policy focus in the UK and elsewhere on dying out of hospital as a marker of good quality of end of life care. We have previously shown that, for people with dementia, hospital deaths have fallen over this time period, possibly as a result of these policies.

However, it is increasingly recognised that the place of death is an imperfect proxy for the quality of end of life care, providing little more than a snap shot of where a person was in their last moments. Continue reading

PSP – more than just difficult PD, and how geriatricians have a key role to play…

Carol Amirghiasvand is the Helpline and Information Services Manager for the PSP Association (PSPA). She has worked in the voluntary sector for nearly 20 years providing information and support to people with neurological conditions. Her current role is managing the Information and Support services provided by PSPA to ensure knowledge and understanding of PSP and CBD is increased and that people affected by these conditions have access to a more acceptable quality of care and support. Follow the PSP Association @PSPASSOCIATION

Progressive Supranuclear Palsy (PSP) is a commonly misdiagnosed neurological condition with an average age of onset of 63. Almost 40% of respondents to a recent survey by the PSP Association saw a geriatrician before being referred to a neurologist, meaning that geriatricians can play a vital role in identifying the disease and ensuring rapid access to the most appropriate care. Continue reading

What does good look like when thinking about care homes?

Claire Goodman is Professor of Health Care Research at University of Hertfordshire. Claire has a district nursing background and is a NIHR Senior Investigator. Her research focuses on the health and social care needs of the oldest old, including those affected by dementia and living in long term care. She leads the DEMCOM study, an evaluation of Dementia Friendly Communities – @DEMCOMstudy @HDEMCOP

We have new neighbours. They moved three miles to improve their children’s chances of going to their preferred secondary school. If they had stayed put they would have been assured of getting a good state education. We are surrounded by Ofsted rated ‘good’ and ‘outstanding’ schools. The issue was that whilst it probably did not matter if their daughter went to a girls only or co-educational school, for their son, a boys only school, with a big focus on sport, would have been a problem. People in my local area know a lot about the schools, they know what the head is like, who the good teachers are, what extra-curricular activities are available and if it’s struggling with its budget. Continue reading

Kindness: The essential skill in supporting a dignified death

Sue Newsome supported her Father during the last year of his life. In this blog she shares her thoughts and feelings from a carer’s perspective.  

My Dad had suffered for a year after his stroke, his gradual deterioration was devastating for him. As his physical and cognitive ability deteriorated he became more frustrated at his dwindling independence. Dad told me he wanted to die many times in different ways throughout the last year of his life. He told me he just wanted “to lay down and die” and that he felt like he was ‘drowning’, as an illustration of his depression. Numerous times he told me he wanted to be with my Mum, who had died 15 years ago. Ironically, whilst I loved and cared for Dad and never wanted to lose him, at times I wanted him to get his wish and die. Continue reading

The chasm of dementia; a carer’s perspective

Sue Newsome supported her Father during the last year of his life after he was diagnosed with Vascular Dementia. In this blog she shares her thoughts and feelings from a carer’s perspective.  

bench-forest-trees-pathSupporting someone with Dementia is a contradiction of what it is ok to feel and the guilt about those feelings. A whole raft of thoughts, feelings and behaviours that I continually checked and reviewed. My relationship with Dad changed, he had never said he was scared before and I was to hear this from him throughout his Dementia journey.

Initially in his phone call to me telling me ‘Sue I am scared I am having a Stroke’ which although slurred was articulate, to the same feeling the night before he died when despite his end stage Dementia and aspiration pneumonia, when he struggled to breathe, he managed to say ‘I’m scared’. His fear and mine punctuated our relationship for the last year of his life. Our fear of the future what it held and how we could adapt. It felt like I held my breath for a year. Living on adrenaline, the skipped heartbeat when the phone rang, what had happened to Dad this time! Continue reading

We need to talk about caring: dealing with difficult conversations

Anna Davies is Policy and Research Manager at Independent Age.

Difficult-conversations-cover_1As a charity supporting older people, we know that conversations about ageing and future care needs are often put off until times of crisis. In some ways this should come as no surprise – thinking about mortality and threats to independence stir up complex emotions for everyone. But we also know the impact of these missed conversations: in particular families struggling to make decisions around care or housing without being sure of their relatives’ wishes. And with more and more older people likely to be relying on family support in the future – one estimate suggests a 63% increase in the number of older disabled people receiving informal care by 2035 – this is not an issue that is going away. Continue reading

If it’s everyone’s business, lets make a plan

Pamela Levack is Medical Director of the charity PATCH – Palliation And The Caring Hospital contactus@patchscotland.com

patchDavid Oliver’s recent blog in the BMJ End of Life Care in hospital is everyone’s business, reports on the findings of the recent Royal College of Physicians Audit into End of Life Care. The two main findings, a need to increase the number of specialist palliative care doctors and specialist palliative care nurses in hospital and to ensure that newly qualified doctors have more knowledge and confidence dealing with end of life situations, match the aims of our recently established charity PATCH Palliation And The Caring Hospital Continue reading

Systematic biases in death certification: a job for the Medical Examiner?

Katherine Sleeman is an NIHR Clinician Scientist and Honorary Consultant in Palliative Medicine at the Cicely Saunders Institute, King’s College London. In this blog she discusses her recent Age and Ageing paper on death certification in dementia. @kesleeman

portraitIt is frequently said that there are just two universal certainties: death and taxes. While HMRC is responsible for ensuring that taxes are paid, information about who dies, where, and how, is gathered through death certification.

Dementia is a public health priority of increasing importance. In 2014, it was reported that dementia had overtaken cancer and cardiovascular disease as the most common cause of death for women in England. We have previously shown that the proportion of death certificates in England where dementia was mentioned as a cause of death doubled between 2001 and 2010.

But what is unclear is why dementia deaths appear to be increasing. Is it due to an increasing prevalence of dementia in our ageing society? Due to increased detection of dementia, perhaps? Or does this increase simply represent an improvement in death certification practices over time? Continue reading

What happens to patients with abnormal cognition picked up by in-hospital dementia screening – Results from GP questionnaires

Sarah Pendlebury is Associate Professor in the NIHR Oxford Biomedical Research Centre and the Stroke Prevention Research Unit, Nuffield Department of Clinical Neurosciences, University of Oxford and Consultant Physician and Clinical Lead for Dementia and Delirium at the Oxford University Hospitals NHS Foundation Trust. Research and audit interests include cognitive impairment associated with cerebrovascular disease and the interactions between vascular disease, neurodegeneration, co-morbidity and delirium and in the use of short pragmatic cognitive tests in patients with stroke and acute illness. Here she reports on an audit of the actions undertaken by GPs in response to letters informing them of in-hospital identification of cognitive impairment in their patient, which will be presented at the upcoming BGS Spring Meeting in Liverpool.

dependent-826332_960_720Dementia and delirium are prevalent in older patients with unplanned admission to hospital and are associated with death and increased dependency, but many confused patients do not have a dementia diagnosis prior to admission. Routine dementia screening for older people (>75 years) hospitalised as an emergency is mandatory in England with onward referral for specialist assessment in those identified as at-risk (dementia CQUIN). Continue reading

No Les, No Moore

5801631762_dd88709954_oPaula Shepherd is a University Practice Learning Adviser for Bournemouth University; supporting pre-registration health education in practice. @pshepherdBU

‘Here lies Lester Moore, 4 slugs, from A44, No Les, No Moore’

At the age of 14, I received the ‘A Small Book of Grave Humour’ in my Christmas stocking. It contains tombstone inscriptions which reflect characteristics of the person memorialised or, should I say, the person selecting the stone. An odd selection for a child, but even at that formative age I realised that we all live on in some form, what we do influences the way the world works; has an impact. So why, I wonder, do we seem so reluctant to incorporate life and death as unified progression? Continue reading