Compassion and the Humanity of Care

Aynsley-Green’s Key publications on Compassion

Why have I produced this compendium?

I’m greatly persuaded by the work of James Pennebaker https://www.selfauthoring.com/james-pennebaker of the healing power of creative writing to help resilience through adversity. This triggered me to explore a series of issues relating to dementia care as my beloved wife of 57 years, Rosemary died after a descent into the cruelty of vascular dementia. Of special significance were the extremes of compassion we saw in the care and NHS systems. This led to a new purpose in life for me, namely, to put compassion back into compassionate care (paper 3 & paper 4).

I was invited to work with the exceptional hospice, Dorothy House https://www.dorothyhouse.org.uk in contributing to their ‘Part of life’ initiative (partoflife.org) that is designed to create a better forum to discuss much more openly matters around death and dying. My previous impactful work on why adults caring for dying people should ask what the death means for children in the family has been re-disseminated (Paper 1).

Two papers (paper 2 and paper 6 ) in the compendium are personal accounts of private reflections on anticipatory grief in the journey through dementia care and coping with the first anniversary of death. I wrote these papers with the intention of making them available to help others facing these difficulties; they have been widely disseminated though the hospice networks and have been well received.

During my wife’s care I saw a much younger woman in her care home with young children who came to visit her. This triggered me to research the plight of such children in families experiencing young onset dementia, Paper 5 is the product of this research, the findings being presented at a major national dementia conference as well as published and shared with policy makers. The research confirms that these children and young people are largely invisible in dementia policy and practice.

The plight of such young people led to several senior colleagues in several universities to come together to share perspectives. It also led to an approach from BAPIO, (The British Association of Physicians of Indian Origin) to examine the circumstances of families in South Asian communities experiencing dementia. This contact in turn led to senior staff in four universities (Bradford, Northampton, Sheffield, and Hertfordshire) to create a formal Alliance (paper 7) to study the impact of dementia in such families, especially the impact on the lives of children and young people. A programme of research has been triggered.

Working with the support organisation Congenital Hyperinsulinism International (CHI) https://congenitalhi.org a series of international conferences were held in 2023 in Lisbon, Rome, and The Hague to work with >600 participants, families, young people, doctors, nurses, and others to explore the journey’ that families encounter as they progress from first point of contact, diagnosis and management of a serious disorder of newly born infants which if not managed promptly can cause life-long brain damage. Harrowing accounts were exposed of unsatisfactory management (eg on being told the bad news of their infant’s condition), all demonstrating the mismatch between the science of medicine and the basic humanity of care. Paper 10 alludes to this work.

A.Aynsley-Green January 2024