Information

Louis Theroux on dementia: The capital of the forgetful

Date Posted: 01.05.2012

With an ageing population, a wave of dementia is approaching. Caring for those afflicted isn't easy, writes Louis Theroux.

Nancy Vaughan is a charming and lively conversationalist, a friendly host, and at nearly 90, still has much of the sparkle and attractiveness that must have turned many heads when she was in her heyday as a model in New York.  But she also has trouble remembering her own name, or the fact that she is married (62 years and counting), or indeed, much of the time, some of the basics of the English language. Nancy is in the advanced stages of Alzheimer's.

On a sunny late autumn day I visited Nancy and her husband, John, at their home in Phoenix, Arizona. We made friendly conversation in the kitchen and for moments I could have believed that she was mentally well. Her smile is still engaging, she is physically fit, and she can sometimes carry on brief exchanges. When I asked if she had any problems with her memory, she said an emphatic "no". But when John posed the question directly "Nancy, what is your name?" she looked a bit baffled. Asked for her surname, Nancy said "Bread", a little uncertainly. I wondered whether this might be her maiden name, but was told that was Johnson.

Nancy and John's life has become surreal and stressful in many ways. John has taken to wearing a name tag with his name on it to help Nancy identify him. He has also stuck a copy of their wedding photo up in the kitchen so that, in her confused moments, he can prove to her that they are married. John cares for Nancy fulltime. They have no children, so there is no family help take the strain - and they are not in the financial position to have Nancy go into a care home. Aged 88, John is the full-time carer for someone with many of the same needs as an adult-sized toddler.

John and Nancy are by no means exceptional. There is a slow-moving tsunami of dementia advancing towards us as our population ages.
 It's reckoned that one in eight Americans aged 65 and over has Alzheimer's - the most common cause of dementia. Nearly half of the over 85s has the disease. As medical science has become better and better at prolonging our lives, the mental side of things hasn't kept pace

Nowhere is this more in evidence than in Phoenix. For years Phoenix has been a mecca for America's elderly, who are attracted by the year-round sun and dry desert heat. Now increasingly it is a kind of capital of the forgetful and the confused. Not coincidentally, Phoenix is also pioneering the way dementia sufferers are cared for and treated.

One of the top destinations for people in need of round-the-clock care is Beatitudes, a gated retirement complex, which has, tucked among its many buildings, a memory support annex. Most of the residents at Beatitudes have seriously impaired memories, to the point where they can no longer look after themselves, are quite often confused, and occasionally have delusions. It's not uncommon for a resident to imagine that they've seen a non-existent intruder, or to suppose that because they cannot find a purse or wallet, that someone has stolen it.

Partly under the influence of a Bradford University-based psychologist, Tom Kitwood, Beatitudes' carers have a policy of not contradicting - and even playing along with - the delusions of the residents, avoiding confrontations, de-escalating conflicts, and "redirecting" the attention of those in distress, using distractions and pleasurable activities.

Beatitudes staff use medication as little as possible. They try to be flexible and adapt to the quirks of the residents and the symptoms of their condition, letting them wander the corridors at night should they feel urge, letting them bathe, eat and sleep on their own schedule, and offering them snacks and chocolate at any time of the day or night.

I spent the best part of two weeks at Beatitudes, observing their practices first-hand. One of the people I got to know was Gary Gilliam. A 69-year old, Gary had been a successful dentist in his younger years, as well as doing time in the army. He'd been at Beatitudes several months when I met him, and though his memory came and went, he spent much of his time under the misapprehension that he was still a practising dentist, stationed at a military base. Gary was genial and playful, constantly cracking jokes, and so it took me a while to realise quite how advanced his dementia was. He told me he'd been having some problems with his short-term memory but he had no idea he might be in any kind of care home. But rather than contradict him, the staff would gently go along with Gary's version of reality. Quite often, especially in the evening, Gary would imagine that his time on "the base" was up. He'd pack his bags and start looking for the exit. Staff would cajole him into staying another night, saying it was a little late now, it was dark out, better to leave it until morning. Or they might ask Gary to look at their teeth, at which point he would switch into dentist mode and forget his plan. Gary also had a habit of forgetting that he was married, despite the fact that his wife of nearly 30 years, Carla, was alive and well, and a frequent visitor.

Being one of the few men on his unit, Gary's company was much in demand. He had two girlfriends, who enjoyed cuddling with Gary, though the exact extent of their intimacy wasn't clear. I had the chance to observe this rather odd love triangle - or "love square", if you include the second girlfriend - when I accompanied Carla on a visit. To my surprise, she suggested that Gary bring one of the girlfriends with him.  She said this would make the visit run more smoothly - seeming to imply that Gary might prefer the company of his new friends over hers - but I was also struck that Carla was keen for me to see and understand the pain and the strangeness of loving someone with Alzheimer's.

Perhaps the most extreme visit I observed during my time at Beatitudes took place between a young man called David Watson and his mother Gail. Though she wasn't very old, Gail's dementia had progressed very quickly. She was on the fourth floor of the Beatitudes memory support building, home to the most advanced cases. Gail could no longer speak at all, though she was physically well, and would wander the corridors often picking up objects and approaching people, endlessly repeating a sound that sounded like "gulla". David tried showing old photos to his mum. He tried stopping her on her perambulations for a hug. There wasn't much sign of recognition that I could see. David explained that his sisters no longer visited. "Because this is hard," he said. But then, a moment later, David's mother leaned in and held his face in her hands. "So that's why I come and visit," he said, visibly moved. "Because sometimes that happens, and then that's good."

 

Near the end of my stay in Phoenix, egged on by John, I volunteered to care for Nancy for half a day, hoping to give him some small respite but more importantly to have a small glimpse of what John goes through on a daily basis. I discharged my duties as carer with mixed results. We played ball in the kitchen and broke a glass. We started a walk and then abandoned it. Some of the time, she was baffled as to who I was and exactly what I was doing in the house. But along the way, we also managed to enjoy ourselves, listening to music, eating lunch together, looking at photos, and indeed chuckling together over the minor calamities that befell us. When John returned and relieved me of my position, I asked him how much of Nancy he thought was left. He answered in the spirit of the engineer he'd been, with an exact number. "Thirty per cent," he said, and then he tapped his head, and said that the rest was still preserved safely in his memory. It was an oddly romantic moment.

The ravages of dementia can be unbelievably upsetting to see. No one would wish the confusion and forgetfulness that goes along with the disease on another person - though sadly, for demographic reasons, they are likely to be an ever-increasing part of our lives.

But my stay in Phoenix also taught me to be mindful of certain positives. However much is taken by dementia, something always remains. There can still be a person beyond their words and their memories, a spirit, for want of a better word, and a continuity with the person they were. Faced with the disease, and with the right support, most people can learn and adapt, finding new ways to love their parents and partners.

 

Source : bbc.co.uk/news/magazine. April 25th 2012


Please choose a sector below

Cancer
  • Embarrassment and fear of wasting a doctor's time affect cancer survival rates read »
  • Cancer patients 'struggle' to meet costs read »
  • My mother died from breast cancer - should I now be tested to find out if I carry the gene? read »
  • Women: Cancer Symptoms You're Most Likely to Ignore read »
  • Women unaware of breast symptoms read »
  • The Good Gift Guide for Chemo Chums read »
  • Life After Cancer read »
Arthritis
  • Exercise and Arthritis read »
  • Caring for a Person with Arthritis read »
  • Self Management read »
  • Diet and Arthritis read »
  • Living with Arthritis read »
  • Distraction is considered to be one of the best techniques for coping with pain read »
Dementia
  • Million 'dementia friends' wanted for training read »
  • Popular anti-anxiety drug increases risk of dementia in elderly by 50pc read »
  • Women who look after their teeth and gums 'have lower risk of dementia read »
  • Get to Know the Symptons of Dementia read »
  • Lifestyle and home remedies for Dementia read »
  • Welcome to Dementiaville: read »
  • Louis Theroux on dementia: The capital of the forgetful read »
  • Panoroma : "Undercover : Elderly Care" read »
  • Basic Tips for Dementia Caregivers read »
  • What is Dementia? read »
  • Facts About Dementia read »
  • Diagnosing Dementia read »
  • Vascular Dementia read »
  • What to do if you or someone close to you has been diagnosed with Dementia read »
  • Treatment for Dementia read »
  • Warning Signs of Alzheimer's Disease read »
  • What to do if you or someone close to you has been diagnosed with Dementia read »
Case Studies
Alzheimer's
  • Loneliness can increase the risk of Alzheimer's in later life read »
  • Why is Alzheimer's disease linked to older age? read »
  • Sir Terry Pratchett: "I thought my Alzheimer's would be a lot worse than this by now" read »
  • Stress of Alzheimer's for families read »
  • Alzheimer's: When to stop driving read »
  • Alzheimer's: Understand and control wandering read »
  • Artificial butter flavouring ingredient 'behind key Alzheimer’s process' read »
  • A project with a holistic theme aims to improve the quality of life for people with Alzheimer’s read »
  • Strides in Alzheimer’s Research Presented at International Conference read »
  • Alzheimer's Disease Linked To Disrupted Sleep Patterns read »
  • New study maps Alzheimer's changes read »
  • Alzheimer's: How to help a caregiver read »
  • Vaccine hope for Alzheimer sufferers read »
  • Drama now on in Temple bar : How families are affected by Alzheimer’s read »
  • What is Alzheimer's disease ? read »
  • The Early Signs and Symptoms of Alzheimer's Disease read »
  • The Alzheimer Society of Ireland read »
Stroke
  • Stroke victims recover use of weakened limbs by exercising unaffected limbs, research finds read »
  • Stroke victims too slow to call 999 read »
  • New movie - featuring older woman with a stroke read »
  • Eating tomatoes may stave off a stroke: research read »
  • Wife of Stroke Affected Husband Develops App for Rehab Speech Activities read »
  • National Stroke Week April 2012 read »
  • How can you reduce your risk of stroke? read »
  • How can you recognise the symptoms of a stroke? read »
  • What are the effects of a stroke? read »
  • What treatment is there for a stroke? read »
  • What is stroke rehabilitation? read »
  • Where can I go for more information on stroke? read »
  • What is a stroke? read »
  • What causes a stroke? read »
  • Preventing a stroke read »
  • Where can I get support after a stroke? read »
  • How do you recognise a stroke? read »
Parkinson's Disease
  • Saliva Gland Test for Parkinson's Disease? read »
  • Parkinson's Disease Research in 2012 - How Far We've Come and What Lies Ahead: read »
  • Shay Healy - How I cope with Parkinsons read »
  • Parkinson's Assocation of Ireland read »
  • Newly Diagnosed with Parkinson's Disease read »
  • Signs & Symptoms of Parkinson's read »
  • What is Parkinsons ? read »
  • Living with Parkinsons read »
Children
  • Scientific breakthrough in study of the genetics of myopia read »
  • Family meals 'boost child fruit and vegetable intake' read »
  • 10-year-olds showing signs of heart disease read »
  • How do you know if you should keep your child off school ? read »
  • Wii games could help children overcome disabilities read »
  • Don't turn a blind eye to the dangers in your home read »
  • Twitter and Facebook 'harming children's development' read »
Multiple Sclerosis
Tracheostomies
Motor Neurone Disease
  • Motor neuron disease, and twins ! read »
  • Charity Take Me Out ! Wednesday April 18th, Dublin. Take part or come along ! read »
  • The Irish Motor Neurone Disease Association read »
  • Can I still drive even though I have MND? read »
  • What are Stem Cells? read »
  • Can MND be reversed? read »
  • What's the Difference between MND and ALS? read »
  • What Causes MND? read »
  • Just Diagnosed with MND ? read »
Brain Injury Information
  • National Epilepsy Week 15th May 2012 read »
  • Services from Headway read »
  • Managing Stress after ABI read »
  • Challenging Behaviour following an Acquired Brain Injury read »
  • Attention and Concentration after an Acquired Brain Injury read »
  • Consequences of Acquired Brain Injury read »
  • What is an acquired brain injury? read »
Men's Health
  • Irish Men treating cars better than their bodies read »
  • Charity seeks hairy Irish males read »
  • Men's mental fitness gets a workout read »
  • MY HEALTH EXPERIENCE: KEVIN HUMPHREYS read »
  • Testicle self-check: How it’s done read »
Blog
  • Tax Relief on the Cost of Home Care - Latest from Revenue read »
  • HCCI issue statement in response to Irish Times Article read »
  • Calls for reform of home care read »
  • Tips for Keeping Warm in this Cold Weather read »
  • Goodbye Grangegorman read »
  • Diabetes: Is sitting the new smoking? read »
  • National Centre for the Protection of Older People's seminar on Financial Abuse read »
  • Gender-bending chemicals found in tin cans read »
  • Getting hip to beating pain read »
  • Chemicals in green tea and red wine may block the brain damage caused by Alzheimer's disease read »
  • Med diet may not protect the aging brain read »
  • St Valentine is also the patron saint of epilepsy. read »
  • Sopranos star reveals how he beat pain of depression read »
  • UK "Neighbours must help elderly more" read »
  • Time for a Spring clean – declutter your home and help Age Action read »
  • Poisoning risk from poorly fitted stoves read »
  • Homeopathy is 'rubbish', says chief medical officer read »
  • Protect your House from Cold and Floods read »
  • Prescription pitfalls: why do patients not always take their medicine? read »
  • Eating strawberries all year round could prevent heart attacks read »
  • Ease Your Irritable Bowel Symptoms read »
  • Flu season read »
  • January is Lung Cancer Awareness Month read »
  • Make your money stretch until payday read »
  • Note to My Patient read »
  • Older People with Sight Loss - Living at Home read »
  • Britain's first ever hand transplant read »
  • The Garden Bird Survey read »
  • Film review: Quartet read »
  • Should I stop drinking alcohol in January? read »
  • Is It Time to Find Elder Care For Your Aging Parent? read »
  • Why I did a good deed every day read »
  • Care in the Stone Age community revealed read »
  • Sternberg Active Life Award read »
  • Chicken soup really CAN fight a cold, say scientists read »
  • DIABETES DIET MAKING DISEASE-FIGHTING EATING EASIER read »
  • Tips for Entertaining Elderly or Frail Senior Guests in Your Home read »
  • Retirement age will increase read »
  • Don't Leave a Legacy; Live One read »
  • How to Stay Warm at Home Without a Heater read »
  • Budget 2013: Elderly hit with cuts to power and phone supports read »
  • Please stay for five more minutes read »
  • What's it like to grow up with a disabled sibling? read »
  • Self-tracking: the people turning their bodies into medical labs read »
  • Meningitis Symptoms in Adults read »
  • Fears over health and loneliness of elderly this winter read »
  • Pet owners more physically fit read »
  • The Seniors Alert Scheme - What You Need To Know read »
  • The change should be in how we perceive menopause read »
  • Is exercise better for your brain than crossword puzzles? read »
  • Free bus pass 'helps keep people healthy' read »
  • App for blind and visually impaired read »
  • A few easy steps to combat your stress read »
  • Are You a "Put Upon" ? read »
  • An Ageing Population read »
  • Napping: Do's and don'ts for healthy adults read »
  • How to Prevent your First Fracture (Osteoporosis) read »
  • Migraine could be a pain in the neck read »
  • Japan's centenarian population reaches more than 50,000 read »
  • Easy to Chew Foods read »
  • A recipe to tackle malnutrition among the elderly read »
  • Calculate your BMI (Body Mass Index) read »
  • New blood test to spot breast cancer early read »
  • Never too old to get active read »
  • Gout cases double in a decade due to the affects of obesity read »
  • Ward off Winter Bugs Naturally read »
  • Is Your Home Ready for Winter ? read »
  • Is it getting harder to die in hospital ? read »
  • Cholesterol: Top 5 foods to lower your numbers read »
  • Marian Finucane speaks of the extraordinary home care her late daughter received read »
  • Healthy Habits for Children read »
  • Grannies on safari in Ireland read »
  • Free mouth cancer checks at 700 dental surgeries read »
  • Mind Moves read »
  • Give Beets a Chance read »
  • Give your body the NCT it deserves read »
  • US teen invents advanced cancer test using Google read »
  • Guide dogs for the mind to fight dementia read »
  • Dealing with Dementia read »
  • Paralympics Update : Ireland win gold and two bronze at Brands Hatch read »
  • Diabetes Ireland advises caution on 'diabetic' foods read »
  • Want to get out of hospital in record time ? Scoff yourself read »
  • Research Suggests that Regular Exercise Might Help You Live Longer read »
  • 67 year old joins TV3's Xpose fashion programme read »
  • Botox can treat problems from cerebral palsy to migraines read »
  • Irish Ladies Golf Union - District National Finals This Weekend read »
  • The Secrets of the Super Agers read »
  • How to Live to 100 - Nine Healthy Habits read »
  • Goodbye Olympics Hello Paralympics read »
  • The hardest choice: A time to care read »
  • 10 things you should never say to someone when they're sick read »
  • Share your Children read »
  • The art of healing - how art & photos can bring a touch of home read »
  • Why going to work on an egg is healthier than it used to be read »
  • Texting is now our most popular form of Communications read »
  • 'Come and live with me, Dad' read »
  • Ping Pong - never too old for gold read »
  • Nurses told to stop saying 'darling' to elderly patients because it shows 'a lack of respect' read »
  • "Mo Sco" Gridlock read »
  • Walking 'cuts breast cancer risk by 30%': read »
  • Irish Silver blogger short-listed for European IT award read »
  • Carers who provide the most intensive care often end up with health problems themselves read »
  • World Elder Abuse Awareness Day Conference - June 14th 2012 read »
  • National Carers Week June 13th -19th 2012 read »
  • Living wills Bill before Dail read »
  • With nursing home beds becoming scarce, it’s time to look at home care read »
  • Clue to Centenarians' Longevity: A Mediterranean Diet & Live at Home with your Family read »
  • Private Home Care at Bloom - Stand G17 in the Grand Pavilion read »
  • 100 years young and still going strong… thanks to her Nintendo! read »
  • 100 years young and still going strong… thanks to her Nintendo! read »
  • Well Elderly Group read »
  • Pilates: a fix for incontinence? read »
  • Sony Radio Academy Awards - Best Entertainment Programme goes to Golden Oldies read »
  • World Elder Abuse Day read »
  • 5 Regrets of Dying People read »
  • Urgently Seeking Carers Nationwide read »
  • Hand sanitiser kills virus on cruise ship read »
  • Visiting someone this year, why not bring some homemade soup and brown bread? read »
  • Revised grant amounts announced for Better Energy homes scheme read »
  • Grannies don't want a 'coffret' for Christmas read »
  • Eating fish just once a week could stave off Alzheimer's by stopping the brain from shrinking read »
  • VHI price increases 'will drive elderly out of market' read »
  • To All Our Carers read »
  • Prime Time Investigates Home Care read »
  • Stuck For Present Ideas read »
  • A Carers Story read »
  • Share A Golden Moment read »
  • What Can Your Carer Do For You read »