Several steps too far

By David Jolley

Our Friday seminar drew us to be aware of a short article in this month’s issue of Age and Ageing from Cochrane Foundation, with the intriguing title: When is Alzheimer’s not dementia?

The authors had published in January an article making similar points in ‘Alzheimer’s and Dementia’

They are writing about guidance on the diagnosis of Alzheimer’s disease by the National Institute on Ageing and the Alzheimer’s Association (NIA-AA) issued in 2018 and published in ‘Alzheimer’s and dementia’ . This new guidance moves matters on from guidance of 2012 which recommended the use of biological markers as adjuncts to clinical characterisation of Alzheimer’s disease, to make the presence of biological markers diagnostic in the absence of clinical symptoms. The markers identify amyloid deposits, fibrillary tau and neurodegeneration. They are demonstrated by examination of the Cerebrospinal Fluid and neuroimaging.

The conservative and highly regarded Cochrane commentators point out that the relationship between the clinical condition, which is what patients, family carers and their professional carers and physicians are concerned with, and these biomarkers is far from equivalence: some people who have clear evidence of the clinical condition do not have the biomarkers. Most importantly in this context, people with the biomarkers do not have clinical impairment and often never develop it.

While the use of biomarkers to define groups for research purposes is reasonable, the extension of their application to clinical practice is unjustified and potentially harmful. ‘Clinical creep’ is the powerful warning term the authors use to describe the inclusion of thousands of normal older people into the diagnosis of Alzheimer’s as required by the new NIA-AA guidelines. This might suit some commercial organisations and even charities, but it would misdirect huge amounts of funds and other resources and raise unsubstantiated worries amongst individuals, families and the caring public. In most economies, the application will be unthinkable – unaffordable.

The enthusiasm of the NIA-AA authors is understandable but it would be inexcusable to adopt their criteria into clinical practice for this would surely do more harm than good. Let us hope that the wise words of the Cochrane Group can hold the day.


Nature’s Therapy

By David Jolley

My attention was drawn to a feature in The Times of April 4th which advises of the benefits of a walk in the park:

The stimulus for the Times Science Editor, Rhys Blakely, to write was a study of cortisol and other stress hormones amongst people with and without exposure to urban nature:

It is quite wonderful what can be achieved by modern science and what interest and satisfaction we get from laboratory studies and measures.

Jane Gilliard and Mary Marshall had edited an impressive collection of papers: ‘Fresh Air on my face’ for Jessica Kingsley 2011 addressing similar issues from a number of perspectives.

Time in the outdoors, especially in places which give you green grass, trees, flowers and the birds, insects and other animals which find their homes there, is therapeutic. Outings are usually accompanied by gentle physical exercise – walking as a minimum – and by social interaction if you go with someone else – and people watching and serendipitous conversations with passers-by. It is an accumulator winner.

Yet we know that many older people, especially those with dementia, are not able to get out and about much. One report is that the average time out doors for a care home resident is less than two minutes a week – Less than two minutes a week!

We can become so distracted by the sciences of biochemistry and pharmacology that we ignore more powerful and modifiable approaches to improve life experience. Anti-psychotic medication is issued with a blanket hazard notice for the statistically significant reduction of life expectation associated with prescriptions to people with dementia: so many thousands of people are said to die unnecessarily. But lack of music and fresh air are just as damaging – the evidence is there. What can we do about it?

Families will always try to give people time for outings. Increased frailty makes the practicalities more difficult to achieve, but even a short walk with a Zimmer frame or a ride in the wheel chair, is valuable and valued. Care Homes face a challenge, but the best homes do make time outdoors a priority. They will ensure their garden is a good place for residents and visitors to spend time in. They may organise regular walks in their local park. This is time and person expensive. It carries a degree of risk. In most homes, the staff will require support from volunteers and visitors to make this therapy possible. But it can be done.

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 and reduced life expectancy for poorer women 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

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

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:

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:

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: (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:

Air pollution in London is associated increased incidence of dementia, especially Alzheimer’s disease

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.