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

Forgotten wisdom: what happens when we die?

8376547873_822be9a7e4_oDr Kathryn Mannix is a Palliative Care consultant based at the Royal Victoria Hospital in Newcastle, who began the UK’s first dedicated palliative care CBT clinic.

‘We’re all going to die!’

No, not a scary action movie, but life. We have been dying for millennia and notwithstanding medical advances, the death rate remains 100%. And yet, despite so many opportunities to study the phenomena around dying, most doctors are unable to describe the process that takes people out of the world.

What a contrast with the processes of pregnancy and birth, to which magazines, shops and websites are dedicated; lessons are delivered in schools; couples are invited for ‘birth practice’ sessions as the due date approaches… Perhaps not all of these analogies are directly transferable to the process of dying, especially as 50% of candidates will expire suddenly, but dying is a recognisable process and modern medicine has largely forgotten it in the rush to postpone it.

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Their death: their story

407953159_d8e8e41ef5_oKatie Wells is a Senior Staff Nurse who has worked with older people for 20 years, and couldn’t think of a more satisfying specialty. Here she explains her work to highlight the benefits of Advance Care Planning, and how the death of her Nan made her want to change the role of ward-based nurses to help patients plan for the future.

With so many older people in their last years of life being admitted into acute hospitals, contact with hospital staff gives us a golden opportunity to develop good relationships with both patients and families. These relationships can allow us to make the time to initiate structured conversations surrounding the care and support patients wish to receive at their End of Life.

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Assisted dying: opening the flood gates or controlling the flow?

6361735901_c7cd4383b5_zDr Damien Bezzina is  a doctor at a large university hospital in the Midlands; he has a special interest in the care of older people, and holds a Diploma in Geriatric Medicine from the Royal College of Physicians. In this blog, he discusses the fallout from last year’s Falconer Bill on assisted dying.

I was watching the news on the 18th July 2014 when I heard about another Private Member’s Bill on assisted dying, put forward by Lord Falconer. A leading campaigner made the comment “Less suffering, not more deaths” and it made me think whether this is a true statement.

I believe strongly in care of the dying, and feel that we, as a medical profession, still widely miss the mark on ensuring we provide excellent care for patients who are coming to the end of their life. However, I’m not yet convinced that introducing an assisting dying law in the UK healthcare system as it stand is a good thing .

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Physician-assisted dying: the BGS, the RCP, and the law

David Oliver 2014 - 1David Oliver is the current President of the BGS, a visiting Fellow at the Kings Fund, and a consultant in geriatrics and acute general medicine at the Royal Berkshire NHS Foundation Trust.

In the wake of Lord Falconer’s Bill to legalise assisted dying for terminally ill patients in restricted circumstances, the Royal College of Physicians of London recently surveyed its members, asking them a number of questions regarding a possible change in the law.

As the biggest speciality within the college, BGS members were among those who responded. It’s the nature of our work as geriatricians that (alongside palliative care and oncology specialists) we spend a greater proportion of our working lives than most physicians dealing with planning, care and support towards the end of life, and supporting patients and their relatives through the final phase of their illness. So we have a key stake and keen interest in this question.

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