The Age Page

Dementia in the Asian community

Yesterday I met the lovely Manjit Nijjar at the Nottingham Dementia Conference, where Suzy Webster and I ran two dementia communication workshops. She kindly gave me permission to publish the story of her care of her father, who, like my mother, had Alzheimer's disease and vascular dementia.

Here is her story...

This is my Dad, my brother and me when the only darkness in our lives came when the sun went down.

My parents came to England in the 1960s. My Dad came here having served in the British Indian Army. He was the most fearless man I ever knew.

Dad and I had an incredibly close relationship, in fact I’d say he was my best friend growing up. When I was 15 or 16 years old the spectre of marriage was on the horizon and my friends were all getting engaged. 

Instead of encouraging me to follow suit, Dad pulled me to one side and said, “Manji, I think it’s about time you ran away from home!”

In late 2004 it became glaringly obvious something was wrong. Mum and I had gradually adjusted our lives to accommodate Dad’s changing needs without even realising it. Dad had gone to bed and suddenly started shouting and banging saying he wanted to get out but he couldn’t find the door. Dad had become afraid of the dark. He never slept in his bedroom again.

2005 followed in the same vein. In February, Mum was diagnosed with terminal cancer and given less than 6 months to live. In May, Dad was given a preliminary diagnosis of Alzheimer’s and vascular dementia. In June Mum died.

None of my Dad’s friends would accept that he was ill. They would cross the street to avoid him causing more distress and anxiety, as he did not understand their behaviour. As far as they were concerned he was cursed and had bad Karma.

The fact that he had been an active member of the community for over 40 years became irrelevant and all the support he needed after Mum’s death evaporated.

On one hand I couldn’t really blame Dad’s friends as they didn’t understand what dementia was. You see there is no word for dementia in the Asian languages. So the word mostly commonly used to describe dementia is the same word for insanity. As far as they were concerned Dad had become infected with madness and it is not only contagious but also could be hereditary.

It did not, however, stop people from giving me remedies to cure him including rubbing his head with almond oil, putting almond oil in his tea, and putting turmeric in warm milk for him to drink.

I have to admit that I had special prayers said for him both in India and in a local Gurdwara, partly in hope of a cure and partly because of our faith. He was Dad and I needed him especially as Mum had just died.

Dad had always been a religious man, so I would take him to our local Gurdwara. He needed assistance with eating so I would feed him Prasad, which is the Sikh equivalent of the Holy Communion. On one particular occasion the congregation had left but I was still feeding Dad. The priest came and turned off the lights.

So there we were, Dad and I sitting in the dark all alone. This summed up for me what it was to be Asian, have dementia and to be a carer. In a flick of a switch we were became invisible and worthless. It was an incredibly lonely and isolating time for us.

Trying to access day care services for my Dad brought its own problems. After all don’t Asians “take care of their own?” There is a perception amongst statutory bodies that Asian communities don’t use services because of extended family networks. Well my brother lives in Canada and we have no family living in the UK. Even if I had family here there is nothing to say that they would have cared for Dad. In that sense are we any different than any other community living in the UK?

The reality was that I felt condemned by the perceptions of the Asian community and those of the statutory bodies which meant that I had no one to turn to, no support at a time of great need. To have had someone to listen to me and help me would have allowed me to focus on Dad and support him better.

Day care became very important to me because I was working full time and I was worried about Dad’s safety as he wandered around the streets of Wolverhampton. It wasn’t until he had been beaten up and been hit by a car that I was able to get the full day care provision for him. I could finally breathe knowing that he was safe. I knew Dad better than anyone else and what he needed was to be at home. All Dad and I needed was more support at an earlier stage to avoid the inevitable crisis upon crisis that rained down on us.

To compound the issue, when he was finally allocated a day care place, I was asked  “Why have you ‘thrown your father away?” by members of the Asian community who knew him. Even though Dad has now gone, I am still being told that I failed him.

Caring for Dad has changed my personal and professional life. I decided to make a difference by working in a third sector organisation with the Asian community in Wolverhampton. In my job I am trying to provide the support that Dad and I lacked so desperately. This involves raising awareness of dementia, helping carers by providing support and advice in a culturally appropriate manner. There are no flashy gimmicks or lavish productions here.

It’s about opening the hearts and minds of Asian people through information; breaking down the prejudice and tackling the fear associated with dementia and showing pictures of a healthy brain compared to one with dementia. In addition we

• emphasise that dementia is a physical illness not a mental heath problem or madness

• where appropriate, talk to the whole family and not just to a couple of members

• provide ‘Caring and Coping with Loss in Dementia’ for Asian Carers by Asian carers

• try to reduce the stigma of day care by encouraging older carers to attend day care services with their spouses, so that it’s a day out instead of an issue of abandonment

• work with Statutory bodies to improve services

In this time of austerity when services are being cut and carers find they are fighting for everything, hard to reach communities become even harder to reach. The fear of dementia and all that it can mean for a community can lead to greater isolation. The people with dementia and their carers within those communities become more marginalised and less visible.

There are pockets of really good work being done across the country by statutory and third sector organisations. 
So the questions I would like to ask you are, "Who is doing this work in your area?" and "Can we do this work together and do it better for the people who matter?" – maybe this is your opportunity to bring your light in to their darkness.

Random Acts of Kindness

This is great! Paul Foreman's inspiring mindmap

More here

Woman's Hour

Someone said, why haven't you blogged about it?

Well, I don't know. (Maybe you can hear the ever-so-slightly whiny, defensive voice.) After all I'm not known for my natural reticence.

But if you are interested at all, the wonderful author Diana Athill and I were on BBC Radio 4 Woman's Hour together talking about gender issues in care homes a couple of weeks ago. With an OBE (DA) and a DAME (Jenni Murray) in the room, my status as a mere Ms was definitely Lowly-Worm but I did my best to hold my own. What a strange expression that is. It was great to be part of it. And the researcher was very nice.

Diana and me (sic) had a nice time before in the Green Room - which was actually grey and daylight free - and if I hadn't been going in the opposite direction we'd have gone home together, - just for a cuppa, you understand.

Anyway, it's here (see 3 May).

 

Waiting for Alzheimer's to strike

A moving film from New York Times about an extended family of 5,000 people who live in Medellín, Colombia, and remote mountain villages outside that city, with more members who live with Alzheimer’s than any other in the world; and a new and unprecedented clinical trial, the first to focus on people who are cognitively normal but at very high risk for Alzheimer’s disease.

 

More here

Speaking as one of 'them', life is a heuristic process

This is Elfriede Bruning, resident of Berlin and 101 year-old author of over 30 books. What a great face, eh?

Under the straightforward heading WHY ARE WE SCARED OF GROWING OLD? last week's Stylist magazine investigated our fear of old age.

As they so rightly stated, "Age brings intelligence, experience, wisdom and beauty", asking young workers hurrying to their jobs who had picked up their free weekly copy on the tube, to consider why we are so scared of it. I have added some of my own thoughts to this long article, at the bottom. (Well, it's my blogpost and I'll blab if I want to).

Here's the article.

"Britain is no country for old men. Or old women for that matter. If we think we’re taciturn and uptight about sex, try talking to us about age. Unfortunately, shoving our heads in the sand about the fact that we, our friends, our family and society at large are going to get old isn’t going to work in the long-term. This year it was forecast that a third of all babies born in the past year are expected to reach 100.

A recent review from the Workplace Retirement Income Commission warned that millions of people face a “bleak old age” thanks to cracks in the private sector pension provision. And last year, the Health Service Ombudsman raised concerns that nearly a fifth of complaints received about the NHS related to care of the elderly, and a dossier containing stories about the alarmingly poor level of care elderly patients receive was published by campaigners.

Add to that the diminishing number of role models – especially women – over a certain age, and you could be forgiven for thinking we live in a world where no-one gets old. The trouble is that many of us find it impossible to relate to these worrying facts, unable to face the reality that every day we inch ever closer to our own dotage.

An old age that we now believe starts at 59, according to a 2012 survey. (Yikes! Surely not that young? I thought 60 was the new 50 etc etc) It seems ‘the elderly’ are ‘them’, not ‘us’, to such an extent that advancing years provide a cloak of invisibility. You might offer an octogenarian a seat on the bus, or let them in front of you in a queue but how often do you engage in an actual conversation with a person you aren’t related to?

It’s easy to forget that the man in his late 80s in Waitrose probably fought in World War II, or that the woman struggling to cross the road lived through an age when it was legal to fire a woman when she got married – and may well have campaigned against it. Our older generations experienced the majority of the most tumultuous century in human history and yet at best we infantilise, at worst outright ignore them.

Pity instead of respect. A 1998 study showed that we use baby talk (higher voices and simpler words) when communicating with people we perceive as old. So why do we have such an extraordinary aversion to ageing?

Eternal Youth

One suggestion is that we aren’t forced to face up to our own ageing process because the elderly are deftly airbrushed out of our lives by an ageist media and a business culture in thrall to youth. A survey by the Department For Work And Pensions concluded that “age-related stereotypes are rooted in British society” with one in seven people saying having a boss in their 70s is “completely unacceptable”. Whether this is because they are viewed as too old to cope in the workplace, or not in touch with modern business technology, it’s something people will have to learn to accept if current proposals to raise the UK retirement age to 70 are successful.

Although one in three people in society is now aged over 50, you wouldn’t know it by looking at how women are represented by the media. Take the landmark case of TV presenter Miriam O’Reilly, 55. After she was dropped from Countryfile in 2009, O’Reilly successfully sued the BBC for age discrimination. A BBC report commissioned following her case concluded there was “particular concern” about the lack of older women represented on television, with more than a third of women over 55 saying there were too few of them.

In trying to combat this, the BBC were accused of tokenism by Carole Walker, a 52-year-old newsreader who believes her subsequent appointment was “nothing more than a PR stunt” after she was given just one presenting shift in three months. It’s not just the Beeb either – in 2008, Selina Scott, 60, won a payout and an apology from Five after apparently being replaced in favour of a younger presenter.

“We're frightened of becoming weak and needy, but those who have a positive view of ageing stay healthier longer”

And the representations of older women we do see in the media are problematic. “These fall into certain groupings,” says Dr Lorna Warren, senior lecturer in social policy at the University of Sheffield. “Firstly, there’s the likes of the impossibly beautiful Helen Mirren or photoshopped images in adverts… And then you get the figure-of-fun stereotypes – think of EastEnders’ Dot Cotton – they’re either sex-starved or asexual.”

Even more damningly, ageism in the media is particularly rife when it bisects sexism. Older men are still afforded a high media profile; just look at George Clooney, Tom Jones (on The Voice), Pierce Brosnan and Jeremy Paxman. However much progress we’ve made in the 21st century, we still inhabit a ‘display culture’ which measures a woman’s worth by youth. So as women lose this, they become overlooked. A poll in 2011 revealed women feel they become ‘invisible’ at 46 and that their opinions no longer matter. A third admitted to being envious of how well their male partners were ageing.

Being bombarded with advertisements with images of dewy teenagers selling us everything from soft drinks to deodorant inevitably has a deep effect on our own psyche. As we grow older, the inexorable march of wrinkles and grey hairs reminds us of our own waning power.

Society has taught us not to see wisdom and experience but weakness and ugliness. So when the inevitable truth of ageing confronts us in the mirror – is this sagging? Is that drooping? – we don’t react well.

Consequently the ultimate compliment has become, “Oh, you don’t look your age!” And it’s not just women in their 30s fishing for it – figures released by The Harley Medical Group last year revealed that there has been a 17% increase in women over the age of 65 using their clinics. Age has become a disease, to be cured and eradicated.

There is, of course, the inescapable fact that the elderly remind us of our own mortality as well as that of our nearest and dearest. We are frightened of becoming weak and needy, of losing our minds and our mobility, so we avert our eyes – a recent survey from the Disabled Living Foundation revealed that two-thirds of us dread becoming a burden on family and friends, while three in four are scared of illness in old age. The irony is that research has shown that those who have a positive view of ageing actually stay healthier longer.

Still, so intrinsic is our aversion to age that it is the first defining characteristic that toddlers understand in others – studies have shown three year olds can easily pick out pictures of differently aged people, pointing to cues such as baldness and wrinkles. We are, it seems, hard-wired to define people by the number on their birth certificate. Tellingly, statistics show that almost a third of people under 25 don’t have contact with anyone over 65, widening the gulf between the generations even further.

Social Change

Psychologically, we prefer to see the elderly as ‘other’ – with different attitudes, tastes and world views – and to admit that we have anything in common is to acknowledge that one day we will be like them (recent research has shown that people exaggerate the differences between themselves and others with characteristics that they fear having themselves).

Interestingly, in more ‘collectivist’ cultures – China, for example – it’s this very reminder of mortality that may underline respect for and the value of the elderly. Families know their time with them is limited, so they cherish their knowledge all the more – growing old is not growing obsolete, it is just taking on new and important roles. Our nuclear society in the UK – where many of us only have irregular contact with grandparents – is very different.

It seems that shifting our attitudes towards ageing would not only be good for old people, but for us in our older age too – studies in Japan, which has a similar respect for age to China, have shown the prevalence of depression and dementia is far lower, implying that this culture may exert a protective influence.

Research in the journal Perspectives On Psychological Science this year has actually shown that we get happier as we get older – when we move from middle to old age, we focus on positive events and filter out bad ones, plus we cope with a negative event by shrugging it off and moving on. So instead of gasping at every grey hair, we should learn to celebrate age, experience and the innate self-confidence that comes with it, to see it as a new stage of life rather than the slow march towards the end of it.

A few of my own thoughts about this.

It was the baby-boomers who invented Youth and many have clung on to it. Marketing and advertising agencies (often managed by middle-aged people) target youth, ignoring the fact that there are less and less of them – and more and more of us; and then ignoring the fact that we grew up – if only in age.

They discard their older (more expensive) staff in favour of younger (cheaper) people – who, in the main, neither know, nor understand older people or their motives for buying products and/or services. Yet it's a mad way to think. After all, it's not predominnantly Youth who have the highest disposable income – many younger people are struggling financially. More recently, the agencies have acknowledged that good advertising and marketing works when it communicates with all ages.

The separation of differing age cultures means we now tend to live in age silos. Many children have never encountered anyone from their great-grandparents' generation. I have seen in the children's workshops we run in care homes, the abject horror on their faces when they have their first encounter with an octogenarian. (They quickly recover of course and many are enthusiastic about the prospect of further conversation and fun after quite a short time.) It is significant that for many young people, Vidal Sassoon (who sadly died last week, aged 84) was just the name of a range of shampoos. 

Until we live actively and compassionately across the generations, in more cohesive intergenerational communities, these problems are bound to persist.

 

My Dear Girl... My Darling Daughter

When I was a child, my dear (very old) grandmother used to say things like "...just pop upstairs for my glasses would you dear, you still have bones in your legs..."   The reminder for this was a touching letter - From a Mother to a Daughter - published by Deana Snyder in the USA, who is part of a LinkedIn group I follow. 

Letter from a Mother to a Daughter:

"My dear girl,

The day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through.

If when we talk, I repeat the same thing a thousand times, don’t interrupt to say: “You said the same thing a minute ago”... Just listen, please. Try to remember the times when you were little and I would read the same story night after night until you would fall asleep.

When I don’t want to take a bath, don’t be mad and don’t embarrass me. Remember when I had to run after you making excuses and trying to get you to take a shower when you were just a girl?

When you see how ignorant I am when it comes to new technology, give me the time to learn and don’t look at me that way... remember, honey, I patiently taught you how to do many things like eating appropriately, getting dressed, combing your hair and dealing with life’s issues every day... the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through.

If I occasionaly lose track of what we’re talking about, give me the time to remember, and if I can’t, don’t be nervous, impatient or arrogant. Just know in your heart that the most important thing for me is to be with you.

And when my old, tired legs don’t let me move as quickly as before, give me your hand the same way that I offered mine to you when you first walked.

When those days come, don’t feel sad... just be with me, and understand me while I get to the end of my life with love. I’ll cherish and thank you for the gift of time and joy we shared.

With a big smile and the huge love I’ve always had for you, I just want to say, I love you... my darling daughter." 

Thank you for sharing it Deana!

A new A to Z guide for dementia

The word “Alzheimer’s” strikes fear in the hearts and minds of most baby boomers. With both “A” and “Z” present in the name, in a way, the journey from “A” to “Z” is already implied. Sadly, with dementia, the map of the journey is so often vague, hard to focus on – or missing altogether.

I commend to you a new, helpfully accessible and simply written handbook, “Understanding Dementia and Caregiving From A to Z” by grief and relationship coach and author Ellen Gerst, which is recently published.

The Guide will help anyone embarking on the journey of dementia with loved ones to learn and understand it better and could make a big difference to the millions of families coping with those who live with this dreadful disease.

It's a helpfully concise and readable book that would be a boon and comfort to anyone embarking on their journey.

As Gerst says, adapting to the discomfort of upheaval and transition is just the beginning. Later, “…facing and dealing with the symptoms of the disease requires a loving heart and an open ear…” But in the end, “the true meaning of life and why we exist is to love and be loved. The rest is details. “ And ain’t that just the truth?

You can buy a copy here

White Ladies No. 11 - Eva Zeizel

Eva Zeizel died on 30 December 2011, aged 105 years old. 

The Hungarian-born industrial designer was known for her semi-abstract work with ceramics from the period after she emigrated to the United States. The first designer in the US to design an all-white dinner service, her principal inspiration was the natural world and human relationships. 

Her work can be found in museums across the world, although Zeisel described herself modestly as a "maker of useful things". Here are a couple of useful things she made...

 

Q: Does Wealth Reduce Compassion?

A: Yes.

Scientific American asks, "Who is more likely to lie, cheat, and steal – the poor person or the rich one? It’s tempting to think that the wealthier you are, the more likely you are to act fairly. After all, if you already have enough for yourself, it’s easier to think about what others may need. But research suggests the opposite is true: as people climb the social ladder, their compassionate feelings towards other people decline."

You can read the article here

White Ladies (not) No. 10 - "Weegee"

 

 

 

 

 

 

 

 

 

 

 

Weegee has long been a favourite photographer. 

Born Usher Fellig in 1899, in an eastern province of Austria, he arrived with his family through Ellis Island (where his name was Americanised to Arthur) to the Lower East Side of Manhattan in 1910.

Stalking the streets of New York City at night alongside police detectives and barflies, the tough-talking, fedora-wearing, cigar-smoking photographer who called himself "Weegee" was ready at a moment's notice with his Speed Graphic camera to respond to the police radio.

From the mid-1930s to 1950s he captured hundreds of pictures of accidents, murders, arrests, fires, and natural disasters, empathetic and sensational works.

Here he is as an older man with a face that tells its own story.