Mother of a Sunday

By David Jolley

There is a way of talking in the Black Country which uses ‘of’, where most would expect ‘on’: So – ‘She died of a Sunday’ translates as – ‘She died on a Sunday’.

This is Mothering Sunday – the fourth Sunday in Lent. The tradition goes back to at least the 16th century when people working away from home, especially those ‘in service’, were allowed to return to their mother church. They would visit their family and often take gifts, including a Simnel cake and flowers – a short break of celebration in the austere days of Lent. The modern equivalent has built on the giving of presents, special meals and cards. Some have become critical of it as a commercial jamboree – but for many it remains a time of genuine reflection on the care received from mothers, sometimes despite great difficulties, more often simply working through the years of dependency and vulnerability toward adulthood and freedom. Mums remain important right to the end.

In a week where there have been many show-stopper headlines which relate to older people: assisted dying www.theguardian.com/society/assisted-suicide and reduced life expectancy for poorer womenhttps://www.theguardian.com/society/2019/mar/27/womens-life-expectancy-in-poor-areas-falls-by-almost-100-days to name but two, Anne Penketh’s ‘My mother has Alzheimer’s. She deserves better than this’ is the most immediately poignant.

It is bad enough that mum’s last months will be affected by Alzheimer’s disease, a deviation from what she and the family might have hoped for, but one shared by many. But the rage is less about the natural world, much more about society’s response to it. Care for people with cancer is more easily accepted as a responsibility of the NHS. Dementia – recognised as the biggest killer in the country by the Registrar General – is often dismissed as a social phenomenon which requires care to be funded by the individual, social services or family. That is not fair. That hurts.

Finding a suitable placement for someone who becomes paranoid, disturbed and difficult to care for is not easy. It will be more expensive, and fear of the probable quality of the environment dominated by others in similar states of decompensation is awful.

Putting together the arguments for assisted dying, the increased death rate amongst the poor and the denial of healthcare status to people with dementia yields an unpleasant summary of institutionalised devaluation of people who are ‘not like us’.

Anne Penketh finds solace in the innocent enthusiasm of a carer who recognises the PERSON who is her mum, rather than recoil from the monster which DEMENTIA will be if not approached with proper respect. In their personal lives, most ordinary people are decent, loving and value others.

And I just wonder what carefully prescribed and monitored medication might do to help. Low dose of an antipsychotic might modify mum’s symptoms sufficiently for her to find peace more easily during her remaining life. But such treatment is too often denied in the face of generalised guidance informed by statistically significant but small reduction of life expectation.

Reading and writing about dementia

By David Jolley

I have been reading Jackie Pool’s book: ‘Reducing the symptoms of Alzheimer’s Disease and other dementias’ for the Dementia Newsletter of Christians on Ageing.

It is a very personal account, sharing with us from the start that her grandmother had begun to act strangely. The family and Jackie as a child did not know of dementia but explained the change as ‘she has gone senile’.

So it was – It is interesting how many people who have devoted themselves to the field have been motivated by experiences within their own family. The wonderful Moira Low, who founded the Wolverhampton branch of the Alzheimer’s society was drawn to it after a career in teaching, by the illness of her mother, and the earlier experience of her grandmother. The family who have given us the Sunrise chain of care complexes were driven to invent better care for their mother in exasperation at the failings of all options open to them in the USA. So many people who come to talk with us at Dementia Conversations have shared similar stories – moving them to begin care agencies, a specialist shoe fitting facility and more.

England’ senior nurse, when asked to speak about dementia did not refer to the literature or NHS websites but to her personal experience of living with and caring for her mother. There is nothing like it for knowing and feeling the condition – 24 hours a day – endless searching for answers and peace.

This must go some way to explaining the powerful feeling of unity within the dementia care community. This is more than a career, or even a personal calling. This is personal. This is family.

Death study

By David Jolley

I have been pleased to contribute to training days organised by Wigan and Leigh Hospice over the past five years. The hospice has pioneered and developed a scheme of extended hospice/palliative care to nursing homes in the area. This brings the skills and wisdom of the hospice to a wider community of people as they approach death. Care Homes are the most common site of death for people with a diagnosis of dementia so that although not exclusively for people with dementia, this scheme is particularly beneficial to individuals living their last months with dementia and their families – and the staff of the care homes. It is a model which is gaining more support across the country than that which we explored – a specialist dementia service – from Willow Wood Hospice in Ashton under Lyne. There are virtues in both. An amalgam of best practices is entirely feasible and may be the future. In addition to the benefits in improving the experience of last months for all parties, these schemes reduce wasteful and inappropriate use of acute hospital beds, investigations and futile and inappropriate treatment.

This week’s session was notable for the inclusion of a presentation by Professor Peter Fenwick a retired Neuropsychiatrist. I met him many years ago when he contributed to a course on EEGs (Electro-encephalograms) at the Institutes of Psychiatry and Neurology in London. In the way of things I had imagined his life being confined to the EEG laboratory and the study of wiggly lines generated by the electrical activity of the brain as transmitted through the skull and its coverings. In recent years, he and his wife and other researchers, have been studying aspects of the experiences of people at the point of death. We heard of deathbed visitors, a waiting place, non-dual consciousness, transformation of consciousness, a new reality, and terminal lucidity in people with chronic schizophrenia or dementia. I might understand more in reading the Fenwick’s book: The art of dying. Curious.

In the beginning, and at the end

By David Jolley

We have become quite accustomed to the routines of funerals. Most involve attendance at a church service followed by a shorter ceremony at the crematorium or cemetery. We are church people, so it is that the church is usually central to this special day.

Increasingly this is not the case for the population as a whole. Many now die declaring they are ‘of no faith’, so some form of dignified celebration of their life, in keeping with their wishes and views, is organised at a non-religious venue. Cremations with no funeral service are becoming more common https://www.co-operativefuneralcare.co.uk/arranging-a-funeral/funeral-choices/direct-cremation/.

The deaths of people of other faiths are celebrated in keeping with their traditions.

Family and friends, including the church community are also fairly busy welcoming new babies. The traditional welcome into church communities is at a Christening service. The number of Christenings per annum has fallen by about 50% in a decade – only 15% of babies currently receive a Church of England baptism. The procedure requires a church community to come together and for the family and wider church to welcome the child as a member of the Christian faith, supported by their parents, God Parents and the church.

Statistic on statistic plots the decline of religious belief in Europe, so that individuals who have been christened are in a minority, as are the families who are taxed to support them to grow in the faith. How meaningful or realistic will such a commitment prove? The power of fashion and peer pressure is frightening.

Yet as we grow old there is need to review personal experiences, personal priorities and beliefs. Reading Karen Armstrong’s ‘A history of God’ is not easy. But very early on she tells us (p 10) that ’creating gods is something that human beings have always done.’ (‘Creating’ might be questioned. ‘Recognising’ might be an alternative).

‘Our current secularism is an entirely new experiment, unprecedented in human history.’ (p 4).

The roots of certainty or uncertainty are set early. That is not to say that people cannot revise their position later in life – but this is an option not taken by many https://academic.oup.com/psychsocgerontology/article/56/6/S326/610642.

The power of green

By David Jolley

As I spend quite a lot of time working with other volunteers to maintain our local park, I was interested to read Tom Bawden’s article in the i 26.2.19 ‘Green spaces boost children’s mental health. His source is a fabulous paper from the University of Aarhus: https://www.pnas.org/content/early/2019/02/26/1807504116.

How can you argue with the immaculate work of authors with names which speak of carefulness? The study combined findings from high resolution satellite pictures of Denmark since 1985, which are used to compute a vegetation index, and the Danish Civil Registration System linked with the Danish Psychiatric Central Research Register. What a wealth of data – based in a long tradition of Scandinavian epidemiology research which was exploited all those years ago by David Kay. The findings indicate that living in proximity to green space during the first ten years of life is protective against the development of mental health problems in adolescence and early adulthood. It does not yet stretch as far as the disorders of late life because we are only 34 years on from when satellite data became available for the first time.

This work adds to the literature which documents the general health benefits of green spaces in the lived in environment: www.sciencedirect.com/science/article/pii/S1618866715001016.

Green space is an antidote to air pollution. There is a literature which has pointed to increased mental health problems associated with raised air pollution: https://bmjopen.bmj.com/content/6/6/e010004 (another Scandinavian study – this one from Sweden).

Returning to green space – review of studies across the life course do find a positive relationship between time lived in a green environment and sustained cognitive function: http://public-files.prbb.org/publicacions/d1c87730-740f-0134-7241-00155df14f0e.pdf.

Air pollution in London is associated increased incidence of dementia, especially Alzheimer’s disease https://bmjopen.bmj.com/content/8/9/e022404.

So time and money spent on our parks and other green spaces are more than justified. First is the provision and maintenance of such resources – the worth of which was intuitively known to philanthropists of the past. The next is to foster activities which encourage people to use them and feel at home in them for exercise, entertainment and relaxation.

Therapy?

By David Jolley

It is refreshing to find an article in the national news which is about older people but does not rehearse the statistics of what a burden we are, and addresses depression, which is something which can affect the lives of people with dementia or without dementia.

Denis Campbell’s article from February 12th www.theguardian.com/society/2019/feb/12/too-many-older-people-given-antidepressants-instead-of-therapy highlights a systematic review from Rachel Frost and colleagues based in University College London and Bristol University. This considered 1471 papers published since 1806 looking at the issue of how older people who are recognised as being depressed, are managed by primary health care staff. Depression is common in old age and older people are present in ever increasing numbers – So this is a Big Issue. Depression is associated with reduced quality of life and with increased mortality, cognitive decline, functional decline and use of health services (ah – burden finds its way in!).

The systematic review was limited to qualitative studies and relies on detailed analyses of only 27 papers which were deemed to meet inclusion criteria.

It is accepted that many people with depression or other mental health problems do not have their condition recognised. Amongst those where primary care recognises their depression almost 90 percent receive a prescription of an antidepressant. This is not deemed good by the authors of the 27 papers, nor the authors of the systematic review. They see depression in older people as ‘understandable’ in terms of the social, physical health and psychological experiences of being old. Therapy should avoid medicalisation of such an understandable condition. Their preferred answer is referral to Improving Access to Psychological Therapies (IAPT) https://www.england.nhs.uk/mental-health/adults/iapt/. The rage is that people age 85 and over are five times less likely to be referred to IAPT than are younger people.

The healthcare professionals who have contributed views to the 27 papers feel this is wrong. But they are the very people who determine when referrals might be made. Odd isn’t it?

But there is something strange about the whole paper and the newspaper take on it: No-one can be against supporting practice which encourages clinical staff to listen to patients, gather a proper history and understand who the person is that they have the privilege to be serving, and the factors which are contributing to their difficulties. We do this for people with any symptoms – including those who have dementia. And we use this knowledge in formulating with them and their families, a strategy to try to help them become well.

The number of older people with depressive symptoms is such that this will always be done in primary care, with referral to specialist reserved for people where symptoms are most severe, dangerous or puzzling. The proposition that the only best practice is referral to a super-specialist, nonmedical service like IAPT is hard to support.

Toward the end of the systematic review we read:

‘When nothing else could be offered, GPs and community nurses tended to provide support themselves to the older person in various ways, or prescribe antidepressants.’

The only thing wrong with that observation is that ‘or prescribe’ would be better said: ‘and prescribed’. In the management of people with dementia, we should never give up on understanding and working with our knowledge of the patient and their family – but it would be wonderful to have a medication which could be as effective as antidepressants are, to add to our basic therapies.

Sunshine

By David Jolley

Yesterday the morning included frost, but the sky was clear and the colours so intense that a familiar journey home from the hospital felt like a dream into another part of the world.

Walking westwards along the Bridgewater Canal at Dunham during the afternoon, the water glinted flashes of light and my eyes screwed up to reduce the glare. People approaching were silhouettes without colour until they had passed by. The air was fresh and we walked on easily toward a broad bottomed barge before turning right, away from the towpath to the lane which snakes back and under the echoing under path. The orchard just beyond is full of snowdrops and crocuses at this time of year – Not that I had remembered until we were alongside them – There they rest this year as every year, white and blue and purple with just a few golden cups.

Clanging over the metal bridge which spans the rushing mill-race we came to the corner which leads to the long straight and narrow road which takes us back to Smithy Lane and on to the entrance to Dunham Park. Either side of that narrow road the hawthorn hedges are bare, their profile spikey and threatening to the unwary. But they were the corridor along which pairs of blue birds flew and flit, over and round, along and back again, thanking the sunshine for such a day and saying joy to all the earth.

Natalie has been struggling to cope with episodes of ill-health and the loss of a friend who had raised the pleasures of each day to new levels.

Walking with a trusted support, through the world as it still is, with memories, pains and possibilities may provide therapy beyond words.