Latest stories from Pilgrim’s Friend Society
Latest stories from Pilgrim’s Friend Society
Listening to the program on BBC radio four about loneliness this morning was very interesting. I stopped and took notes. Loneliness is a big and growing issue, with millions of over 50s said to be vulnerable. And of course, younger generations are not immune.
The BBC has done some quite extensive, countrywide research, and they’re sharing their findings in a series of programmes.
Sometimes, research shows, people are lonely because they are not able to socialise easily. They are not trusting people, often because in their lives they’ve experienced discrimination. The programme included a woman who had experienced it at school: she was blind and remembered how her teachers didn’t accommodate this and make sure she was included in learning groups.
Discrimination is particularly true of older people, many of whom have experienced it for decades, because of ageist attitudes. They can feel ‘less than’ others, and fear being rejected by them. Part of the answer, said an expert on the BBC programme, is exposing people to more ‘trust terms’; language that is about trusting people, so they increase their trust in others, which then has a knock-on effect in reducing loneliness. It’s also about building confidence in oneself.
The Internet and social media can help, but only a little. The BBC study noted that people who are lonely tended to post negative comments, which only reinforced their feelings and doesn’t help to establish relationships online.
Several months ago I blogged about 90-year-old Derek Taylor from Manchester, who felt isolated and alone after the deaths of his partner and sister. He said, ‘”The older you get, the less people seem to contact you… and I thought what can I do to stop being lonely?’ His tips, which include having local coffee clubs and being in more contact with neighbours, have been distributed by Manchester City Council. You can read about him here: https://www.bbc.co.uk/news/av/uk-england-manchester-38804340/loneliness-tips-from-90-year-old-published
So what can we, as Christians, and in our churches do about loneliness? I believe it begins in our churches, by making sure we speak to one another, and that no one is left out. Those of us who find it easy to engage socially can speak to those who don’t. And pastors can encourage this kind of interaction, beyond the pause for ‘the peace’. When we have teas and coffees before and after services, make sure no one is on their own. Take a genuine interest. Also, note when someone isn’t coming to church, and don’t let them drop off the radar. Find out if they’re alright. These are only little things, but little drops make an ocean.
And how about this tactic? In my friend Janet’s church, the pastor asked everyone over 60 years of age to stand up. Then he invited the others over the age of 30, to choose an older person to partner with – to get to know. Janet and her husband Peter are partners with John and Sue, a married couple in their thirties. Janet said they enjoy each other’s company and are learning so much from each other. Such a simple thing to do! But so effective!
Grandparents are GOOD for their grandchildren. Most of us know this, of course, as do our bank managers, but now it’s official. ‘Research shows that kids who grow up having a greater emotional closeness to their grandparents end up being far less likely to struggle with depression as adults,’ says research published by the Illinois Association for Infant Mental Health. ‘Raising your children near your parents and giving them the opportunity to form their own strong relationships is the greatest gift you could give them, it says.’ It helps them develop emotional intelligence (which gets you further in life than IQ), and also results in most grandparents involved like this living longer.
And the grandparent effect lasts a child’s whole lifetime. I’ve lost count of the times someone responds to the Gospel message with,’My grandmother used to say things like that,’ or, ‘My granddad used to take me to church.’ Talking about his career options with a 30 year old recently, I said how God had everything planned out for him, before he was born, even. ‘Yeah,’ he said, ‘My grandparents used to take me to church. They used to say things like that.’
Grandparents are just one of the reasons God designed old age. Our latter years are no mistake. They are full of purpose, and blessing grandchildren is one of them.
There’s a story in the news today about a man whose who suffered life changing depression after being misdiagnosed with Alzheimer’s disease. It wasn’t an immediate diagnosis, but one that came after two years of tests and scans. Alarming aspects to this story are that the diagnosis was based on a hypothesis that has been proven to be false, and that misdiagnoses like this are happening all the time. *1
Over a period Martin became anxious that he was forgetting things, and his GP referred him to a dementia clinic at a London teaching hospital. The diagnosis came because the consultant wanted to diagnose a medication that is prescribed for Alzheimer’s, but needed first to make an official diagnosis. She told him that scans showed that his ‘hippocampus was riddled with sticky plasma of the kind indicating Alzheimer’s.’ Although he felt he had to trust the consultant’s judgement, he and his wife asked to see the scans showing how the disease had progressed over the past two years. She said she didn’t have the equipment to show them, so Martin asked for a second opinion.
His wife said the diagnosis had a profound effect on him. He said, ‘from the moment I saw myself as an Alzheimer’s patient I began to dismantle my life and my dreams of the future.’ He retired from his job, terminated a contract with a client he worked for four decades, cut back on plans he had made that included voluntary work and adventure holidays.
Eventually he saw consultant neurologist Dr Catherine Mummery, at the National Hospital for Neurology and Neurosurgery in London. Dr Mummery said she sees several cases a month where the diagnosis should either be of another dementia,’ or where we have to retract the dementia diagnosis altogether.’
‘Martin was given a diagnosis based on a PET scan of his brain; however there are a number of conditions from menopause to depression or schizophrenia where changes may take in brain metabolism, so caution is needed.”
It’s interesting to see that protein deposits on the brain are still being seen as the cause of Alzheimer’s when this theory was publicly discarded last year, after increasing studies showing that older people can have quite large deposits but no dementia at all. The ‘amyloid B hypothesis’ was finally dismantled by a leading neuroscientist, Dr Bart de Strooper, at a major European neuroscience conference. A front-page headline in The Times blazoned how, after 20 years of failure to find a cure, the ‘amyloid B hypothesis’ was now abandoned. Instead, researchers in eight research centres in the UK and Europe are now looking into the effects of inflammation on the brain’s immune system. (See https://blog.pilgrimsfriend.org.uk/big-turn-around-alzheimers-20-years-failure/)
The head of research at Alzheimer’s Research UK says that only 60% of those estimated to be living with dementia have a formal diagnosis. It could be that among the numbers diagnosed, 534,621, there may be similar misdiagnoses. (I wrote last year about the 88-year-old wrongly diagnosed who sold her house and went into a specialist unit only to be told a year later that she had mild cognitive impairment, caused by depression.)
The figure commonly quoted for people with dementia in the UK is 850,000 – 315,379 higher than the actual number of 534,621. That 60% estimate – and that’s all it is – is based on projections calculated in the 1980s, that have not been realised. The rate of new cases of dementia has dropped by 20% over the past two decades. *2
Arguably, the advertisements that the Alzheimer’s Society produces are fear-based. ‘I wouldn’t want my daughter to go through what I’ve been through with my mother,’ intones a current radio commercial.
So it’s not surprising that the dread of dementia is such that, when an older person finds themselves becoming forgetful, they assume it is dementia. And with the push for more diagnoses and the use of misleading figures, even the experts are getting it wrong.
Once I made a mild protest to an Alzheimer’s advertisement on social media, pointing out the inflated figures used. Back came the sharp retort that I was being mealy-mouthed about the figures because dementia was bad, never mind the actual numbers who have it, and people should donate to research into it.
Yes, we do need research. Two leading pharmaceutical companies have dropped their research budgets because of the failure of the past 20 years. But is it right to put out fearful advertisements and articles that are pushing people into misdiagnoses?
*2 (See https://www.alzheimersresearchuk.org/study-reports-20-drop-in-uk-dementia-incidence-over-two-decades/?gclid=Cj0KCQjwof3cBRD9ARIsAP8x70PoMS0YFazUITkt2KqryQZXTI8YzVC5JiFIdpbcqmWTqsNq4SMzWS4aAk0sEALw_wcB)
If you were visiting your mother with dementia in her care home, how would you feel if you found her having an animated conversation with a 4-foot-high robot, which was responding empathetically, and creating a warm dialogue that was obviously engaging her?
It may sound like science fiction, but it’s already here. Last November, Southend Council paid £15,200 for one of the robots, called ‘Pepper,’ to free up time for human carers running a “reminiscence group” to stimulate sufferers.[i] It’s the first commercially available robot with the ability to recognise a person’s mood and adapt its behaviour accordingly. He can change his eye colour and voice to match happy and sad emotions. Pepper can speak 12 languages and is also connected to the internet, which means he can keep users up to date with the latest news, weather, recipes and videos.
Artificial intelligence is coming on in leaps and bounds. In a TV programme on Channel Four recently we saw computers forming new neural networks to expand their intelligence – exactly as human brains do. We saw a computer programme beat the world champion in a complex game called ‘Go’, which involved learning on the spot and thinking ahead with strategic moves. Although the world champion had an inscrutable expression, he was clearly astonished. The programme was the work of Deep Mind, the London based company that is leading the world in artificial intelligence.[ii]
So the little androids will be able to find out about an older person’s likes and dislikes and tailor conversations to them, just as ‘two people might do in a normal conversation’, according to Dr Chris Papadopoulos from the University of Bedford.”[iii] Dr Papadopoulos is working with Advinia Health Care, as part of a £2.5 million EU funded project. Chairman of Advinia Health Care and research partner in the study, Dr Sanjeev’s Kanoria, said that there’s a pressing need for support in the social care of the elderly, and robots can help in many ways. They can also share what they learn about individuals with carers, ‘enabling them to do their task better.’
He said, ‘Particularly for dementia patients, agitation can be reduced by offering culturally-appropriate care support.”
The idea has appalled some. Judy Downey, of the Relatives and Residents Association charity, said: “This is treating people like commodities. The key to looking after someone is having a relationship in which you might notice if someone is upset after a phone call or if they look unwell. What matters is the smile, the human touch.”[iv] It also begs the question whether it is ethical to encourage people with dementia, with impaired cognition, to engage with a robot that converses like a human, although they do not have a humanoid shape. Conversations develop relationships.
Her concerns were echoed by Dr Jonathan Sacks, who looked at the moral challenges that the new AI is bringing, in one of a series of radio programmes about morality. He said that we need these systems to be answerable to our values,’ [v] and discussed ways in which our values could be defined, which would include discussions with religious leaders and others, and be embedded into the systems.
The debate is taking place in a care system that is in crisis to the point of collapse, say some, not only because of severe underfunding, but a chronic shortage of care workers. A survey showed that almost seven percent of jobs in the social-care sector are vacant, while projections show that the care workforce needs to grow by 2.6 per cent a year to keep pace with rising the elderly population. However, the workforce is only rising by 2 per cent at the most – meaning the shortage will only increase.[vi] Another commentator has pointed out that at £15,200, a robot costs less than the annual salary of a care worker.
A newspaper article[vii] shows how the robots can be a great, practical help to frailer older people in their own homes, and it’s clear that, to an extent, they can help support carers in residential care homes. The question is how far we are prepared for them to interact at a deeper, personal level with residents, especially those with dementia? God designed people to develop in relationship with one another, the scriptural ‘I – Thou’ principle espoused by philosopher Martin Buber in his classic work published in 1923, that deeply influenced the trail-blazer in person-centred dementia care, Professor Tom Kitwood (Bradford University). Kitwood referred to it in his ground-breaking book, ‘Dementia Reconsidered’ that is still the gold standard of dementia care. What would Kitwood think of residents and robots?
In our care homes we have trained ‘hummingbirds’, staff who come alongside residents with dementia to engage them in conversation on topics that are meaningful to them. And we are blessed by volunteers from local churches who come in to share their time, and give spiritual support. If there’s a ‘take-away’ thought from this article, it’s to pray for more staff, and more volunteers, not just for our homes but all those others who are doing their best.
[v] BBC Radio 4, September 6th, 1028
It always seemed to me that one of the daftest reasons for taking a holiday was to ‘get away from it all’. I used to think if ‘it all’ was that bad, why not fix it, so you didn’t have to escape from it? I’ve never really liked taking holidays and wondered if this was because I lived for many years in a villa on a beach in Dubai where, when it wasn’t too hot, we would walk over the mound of sand covering the back garden gate and onto the beach. Us ex-pats would look forward to holidays in cool, green Britain and stocking up in Oxford Street’s Marks and Spencer that sold garments with peel-off labels to avoid the ban on taking Jewish goods into Arab countries. But most of all we’d look forward to being with relatives and friends again.
So it was interesting to read in psychiatrist Dr Max Pemberton’s weekend column[i] that he loathes holidays. He takes time off, but he very rarely goes away. And that’s because he loves his day-to-day life, and he’s worked hard over the years to get the balance of work and play just right. In other words, he doesn’t need to ‘get away from it all’.
He was responding to a suggestion in the media that doctors ‘prescribe’ holidays to middle-age patients to protect them from heart disease, after research found that people who took less than three weeks leave each year were 37% more likely to die young than those who enjoyed plenty of holidays. I wondered if the research was funded by the travel industry, because the findings are like many that show correlation rather than cause. It’s like saying that people who drink green tea are less likely to develop dementia, where the significance is in the overall lifestyles of people who drink green tea, not just the green tea itself. Perhaps they have less stress, for example.
Of course, if you love skiing, or climbing mountains or kayaking over white-water rapids, or just exploring new places, there’s joy in those holiday. That’s not about ‘getting away from it all’, that’s about travelling to places for a purpose.
It puts me in mind of two elderly men who used to look forward to their annual holiday in Wellsborough, one of our care homes in the countryside. They enjoyed each other’s company very much, and appreciated the good care they received. What blessed them especially was knowing that their families, who were caring for them, could have a holiday knowing that they were in safe hands.
That’s the sort of prescription the government should be enabling doctors to write – a few weeks’ respite care for the families who are caring for elderly relatives. It’s known that long-term caring can cause hypertension, diabetes, immune related disorders and even early death, so I’m sure the benefits would far outweigh the costs. It would be good if those decision-makers living in their individual government silos could join the dots, and help families by funding holidays like these.
[i] Daily Mail, Saturday, September 1, 2018
Almost half of people admitted to hospital over the age of 70 will have dementia, according to Dr Liz Sampson, of the Marie Curie Palliative Care Research Department at University College London. They studied the link between pain and delirium among people with dementia in hospital, and found that even though these conditions are common in this group they are “often under-diagnosed and under-treated”. They also found that pain may be a cause of delirium. Almost half (49%) of the patients studied were suffering pain while resting, and 15% developed delirium.
But sadly, the patients with dementia weren’t able to ‘self-report’ it; in other words, they couldn’t tell nurses and doctors that they had a pain.
It reminds me of a newspaper column written a couple of years ago by Dr Max Pemberton, who was working in A&E when a home carer, Mark, brought in an elderly man in a wheelchair, who had dementia and was totally uncommunicative. ‘He’s not right,’ said Mark, ‘he’s got a pain somewhere.’ Dr Pemberton asked how he could tell. Mark insisted, ‘See that twitch in his eye? He does that when he’s got a pain.’ Tests revealed that the man had a urinary tract infection, which would indeed, be painful. Dr Pemberton wrote that he wished all carers would be concerned enough to know their patients as well as Mark did.
And here’s the rub when it comes to patients with dementia on hospital wards: staff do not know the person’s normal behaviour. But many will have a ‘Mark’ who could be consulted, perhaps not a carer but a relative.
Dr Samsung said, ‘“It’s deeply troubling to think that this vulnerable group of patients are suffering in silence, unable to tell healthcare professionals that they are in pain.’Dr Doug Brown, chief policy and research officer at Alzheimer’s Society, said,‘ “We now need to take steps to ensure that all healthcare professionals have the right training to identify such distress in order to properly care for people with dementia.” Dr Jennifer Bute, a retired GP and an expert on dementia said, ‘a basic principle is that if someone who has dementia gets worse first thought is to query whether they have an infection or is something wrong?’
This seems to be no clear solution for patients with dementia in hospital. But the NHS could learn a lot from Dr Jennifer Bute. In her book, ‘Dementia from the Inside: a Doctor’s Journey of Hope,’ she describes the ways she has discovered of communicating with people with quite advanced dementia in the ‘dementia inclusive’ village where she now lives. The book will be released in November this year.
‘There is so much good in this world, and it starts with simple acts of kindness,’ writes Julie, who moved in with her father when his dementia began to worsen. Amidst the sadness and pain, she decided to look for joy and peace in little things, and the moments that would light up her dad’s eyes.
And one morning, when Harold was due on his round, her dad asked her to take a chair out to the pavement so he could talk to him. She stood with him until Harold arrived. Soon after, she noticed her dad in tears:
“Dad starts crying and asks for me to walk away. I ask why, and he says, ‘Harold is a good man. He is religious, and I want to pray with him for you.’ It breaks my heart, I had to walk away.”
She said, “I remember thinking to myself as I was walking back to the porch that no matter what disease my father has, it will never take away his love for me. I’m trying everything in my power to stop the tears and gain my composure. Then I look back and see Harold on his knees next to my father sitting in the chair, and there was no stopping the crying at this point.”
What amazed Jullie most was seeing someone who was practically a stranger have such patience and compassion for her ailing father: “Although we have had Harold as our garbage man for many, many years, he truly doesn’t know us. He knows my father has Alzheimer’s and knows we are friendly people that talk to him weekly, but he doesn’t know us. This stranger is on his knees praying with my father for me.’
She took a picture to capture this simple act of kindness. ‘Harold has touched my heart and I knew I had to share this with friends and family on Facebook. There is so much good in this world, and it starts with simple acts of kindness. Harold, thank you for your kindness and prayers. I will never forget this moment.”
In a week when a national newspaper has published a double page spread exposing cruel treatment of people with dementia in some of Britain’s care homes Julie’s story highlights how important a single, human interaction can be. One person can make a difference. It’s an opportunity for Christians in churches that are near care homes – they can visit; befriend, take services and encourage. Their presence can be a signal to carers that someone is taking notice … that there are people who care, as well as residents’ relatives. Also, wherever there is poor care, it can be reported to the local Care Quality Commission through its website.
Harold made a difference to Julie’s Dad, and to Julie’s life. We can do the same for others.
Avoiding Isolation is the Key for Seniors to Have a Happy Life, is the headline of a sensible little piece in the Chicago Herald recently. It repeats what we read in scientific studies as well as in the media, and basically it’s good, common sense. It gives tips for helping older people to stay socially connected, and I’ve added a few more to suit our British culture.
Have a hearing and vision test. Loss of hearing and vision can creep up gradually and not be noticed. An editor said to me once that when he had his first pair of glasses he was amazed at how black the print was on the page!
Everyone needs a purpose, whatever your age. Find a hobby, do volunteer work, knit blankets for Romanian orphanages, help out at your local charity shop, or what ever comes your way that suits you. Sandra, in her 80s, who is housebound telephones five other people that she knows from church in similar circumstances every morning with a little chat and an encouraging Scripture
Find out what local activities you could join in – ask your local library; look in your local newspaper, look on the notices in your supermarket to see what clubs or events there are you could become involved in.
God designed human beings to live and develop in relationship with one another. From the very beginning He said that it was not good for man to be alone, and that goes for women too!
Currently being populated is a new, interactive internet map that when you click on a region information about the events taking place there will show on a sidebar, together with contact details. The website is Faith in Later Life (FiLL), currently being developed as a resource hub for churches and faith groups and individuals who want to befriend and support older people. If your church is interested, send an email to the FiLL director at email@example.com .
A newspaper picture recently caught my eye as one of the ladies in it is the dead spit of former Coronation Street character Ena Sharples – it’s the expression on her face, and the way she is holding a glass. The story is about the 1950s ‘Pit Stop’ diner that a care home has created for its residents.
There’s also the replica bus stop for patients with dementia at a hospital set up in a corridor as a ‘quiet and safe place’ to help prevent them becoming unsettled or anxious.
Often people with dementia try to make sense of the present by relating it to events in the past. In ‘Contented Dementia’, Penny Garner’s mother, a much travelled lady, made sense of being in the doctors’ waiting room by thinking she was at an airport, waiting for her flight to be called. It seems a small mercy, because in the past their identity was clear; they knew exactly who they were.
But, is this kind of deliberate, constructed reminiscence such a good idea? Most cases of people with dementia are those in their 80s and older, who’ve lived full lives for decades beyond their ‘pit stop’ days. Relating to them in conversation when time travelling is one thing – taking them back deliberately is another, surely? Environment is not the same as active therapy.
On the other hand, the replica bus stop is something in the here and now. People with dementia can feel that they are not quite in the right place; waiting at the bus stop meets that need, and gives a sense of purpose. I’d be interested to hear others’ thoughts and experiences.
There’s a small niche in our care home in Wantage that is perfect for bookworms and writers whatever their age! It’s a corner tucked under the stairs with a desk, a typing chair and a typewriter, surrounded by walls lined with books. Except they’re not real books – it’s thick wallpaper where the books look so real your hand goes out to pull one off the shelf. My well-being index shoots to 100% each time I see it. There will be places like this in Heaven, probably with cups of tea. Knowing how much I love it, the maintenance manager has given me some of the leftover wallpaper and the address of the supplier. Now all I need to do is to find a free wall in my own home, which would mean moving the hundred or so real books…
It’s often said that younger people look to the future, and older people to the past. But older Christians have a much better option – they look to Heaven, to the future that lasts forever.
I thought I was dreaming when I read the headline, ‘Elderly should be housed in luxury developments with spas to keep them out of care homes,’ adding that government plans will see £76 million invested annually for the next three years in new homes such as these. [i]
I looked twice to make sure I was reading it properly and then peered into my coffee to make sure there were no dubious herbs in it.
The government doesn’t want to fund people for residential care. Instead, it prefers social care in individual’s homes in the community, though with local authorities receiving less central cash this isn’t doing at all well. Since 2011 there’s been a continuing rise in death of elderly people, with reports showing that they are ‘now bearing the brunt of a growing crisis in the NHS and cuts to social care, with women suffering the most.[iii]
But it seems that £315 million has already been allocated to projects which design ‘luxury developments’ of specially designed homes. 3,300 specially designed new homes have been built following previous bidding rounds. ‘One scheme in Manchester is using the funds to develop 135 flats for the elderly which have onsite facilities including a spa, beauty salon and a bistro. The plans also include dementia-friendly design, landscaped sensory gardens and communal function rooms.’ The care minister, Caroline Dinenage, said housing like this helped elderly people to maintain independence ‘We need to encourage far more of these types of developments. Communities likes these can improve quality of life, help more people live in the community for longer and keep the pressure off our health and social care system – something we all want to see,” she said.
Well, shine on Sherlock! We’ve had schemes like this for a number of years. Pilgrim Gardens, in Leicester won a clutch of awards in its first year (2012) for its design and environmental innovations, and attracted so many visiting housing experts, including government advisors, that the manager was thinking of charging for her time. Most importantly – people love living there. You can take the tour here – https://www.pilgrimsfriend.org.uk/pilgrim-gardens.
And Royd Court, our 58 apartment scheme in Yorkshire, is a thriving community that also benefits the wider community with, among other things, its dementia café and involvement in ‘Mirfield in Bloom’. You can see the video here: https://www.pilgrimsfriend.org.uk/royd-court
Despite the success of our schemes and their national awards, Ms Dinenage seems unaware of them. Yet, wouldn’t it make sense to invest in the developers (PFS) of the ‘proven principle’ here?
Of course, the real ‘luxury’ for residents in our housing (and in our care homes) is that they are living in a caring, Christian environment. It’s like a scent of Heaven, from the moment you step through the ddoor. ‘I feel secure living here,’ said a resident of Pilgrim Gardens. ‘I can’t find the words for the support I received from everyone living here when my wife was ill,’ said a man at Royd Court. ‘It’s like being on holiday the whole time,’ said another, ‘you feel that the pressure is off.’ I think it would be great if we had schemes like these in every county in the country.
So the government is thinking along the right lines, even if it’s not seeing the whole picture. And while we may not benefit from its investment pot, we know that we can look to the One who ‘owns the cattle on 1000 hills’ (Psalm 50:10) and more.
Christian providers of respite, residential, nursing and dementia care. Also retirement apartments for assisted living and for extra care housing, and fully equipped houses for missionaries' home leave.
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