Inspiration from Steve Jobs

With Steve Jobs passing, huge tributes have been paid world over to his genius. Recently his commencement address at Stanford University in 2005 was published again. Reading his speech filled one with hope and energy.

He tells 3 stories that he calls - Connecting the dots, Love and loss and finally Death. All these concepts are familiar to us but somehow his way of telling it puts in perspective for us again.

In ‘Connecting the dots ’ Steve says “You have to trust in something — your gut, destiny, life, karma, whatever” . Hindus believe in Karma. Whatever happens is for the best and has a reason. The reason is not apparent immediately but when you look back on life you realise that whatever happened was to prepare you for something to come. Steve says that this approach never let him down in life.

In ‘Love and Loss’, Steve tells the story of how he was fired from Apple - the company he founded. He did not let the loss get him down. He realised that he loved what he did at Apple and with the lightness of a beginner got down to work again. He set up two other companies NeXT and Pixar. Pixar created the world’s first animated feature film – Toy Story, and is the most successful animation studio in the world. Apple bought NeXT and he entered Apple again with the technology he developed at NeXT. Steve says if he had not been fired from Apple, he would never have established NeXT and Pixar and never met his wife Laureen. So find the job you love to do, keep looking till you find it and don’t settle for anything less is his advice.

In Death, Steve talks about how he had cancer of the pancreas and the doctors had given him a few months to live. Luckily with surgery he made a recovery. A quote he had read in his teen years had impressed him. “If you live each day as if it was your last, someday you'll most certainly be right." Since then, he asked himself: "If today were the last day of my life, would I want to do what I am about to do today?" And whenever the answer has been "No" for too many days in a row, he knew he needed to change something. Steve says knowing death was imminent, all external expectations, all pride, all fear of embarrassment or failure - these things just fall away leaving only what is truly important.

What I took away from this message of Steve Jobs; as caregivers, we have often asked ourselves - why me? The answer is - Because You Can. The Universe knows the strength in you. You need to recognise it too. Trust yourself. You can connect the dots later.

Wandering Behaviour: How to prepare for it and prevent it

Statistics say 60% of persons with dementia will wander as they lose their ability to recognise familiar places and faces.  Many people cannot even remember their name or address. They may become disoriented and lost, even in their own neighbourhood.  

Although common, wandering can be dangerous – and even life-threatening.  When people with Alzheimer’s and other dementias walk off (and this can happen very quickly) they don’t think they’re lost. They have a destination in mind and they think they are going there the right way. Sometimes they may even hide from those searching for them due to paranoia. So searching and getting them back is not easy.  Even when wanderers are found, by the police or friendly strangers, they may be unable to supply their names or addresses.   The best way is to be prepared for it and to prevent it.

Following are some tips given by The Alzheimer’s Association to help caregivers of Alzheimer’s patients with wandering behaviour.   

Wandering: Who’s at risk?

Anyone who:

            • Returns from a regular walk or drive later than usual

            • Tries to fulfill former obligations, such as going to work

            • Tries to “go home” even when at home

            • Is restless, paces or makes repetitive movements

            • Has difficulty locating familiar places like the bathroom, bedroom or dining room

            • Checks the whereabouts of familiar people

            • Acts as if doing a hobby or chore, but nothing gets done (e.g. moves around pots and dirt without planting anything)

            • Feels lost in a new or changed environment

Consider behaviour

            • Be aware of who is at risk for wandering.

            • Identify the most likely times of day that wandering may occur, and plan activities at that time.

            • Provide opportunities for activities and exercise, such as folding towels, listening to music and dancing.

            • When night wandering is a problem, make sure the person has restricted fluids two hours before bedtime and has gone to the bathroom just before bed. Limit daytime naps, if possible.

            • Monitor reaction to medications. Consult a physician, if necessary

            • Use communication focused on exploration and validation (not correcting) when the individual says that he or she want to leave to go home or to work.  (ie. Don’t just stop them, join them and show them that they are mistaken – so they lose the urge to leave at that time)

            • If wandering is in progress, use distraction to redirect the individual’s focus.

Consider the home environment

            • Night-lights: Place throughout the home or facility.

            • Locks: Place out of the line of sight. Install slide bolts at the top or bottom of doors.

            • Door knobs: Cover knobs with cloth the same color as the door. Use childproof knobs.

            • Doors: Camouflage doors by painting them the same color as the walls. Cover them with removable curtains or screens.

            • Use black tape or paint to create a two-foot black threshold in front of the door.

            • Warning bells: Place above doors.

            • Monitoring devices: Try devices that signal you when a door is opened. Place a pressure-sensitive mat at the door or person's bedside to alert you to movement.

            • Hedges or fence: Put around the patio, yard or other outside common areas.

            • Safety gates or bright colored netting: Use to bar access to stairs or the outdoors.

            • Furniture: Consider providing a recliner or geriatric chair for the individual to sit and rest. It is comfortable and yet restrictive to the body. Use round-cornered furniture, placed against the wall. Remove obstacles.

            • Noise levels and confusion: Reduce excessive stimulation caused by movement or noise.

            • Common areas: Develop indoor and outdoor areas that can be safely explored.

            • Clothing: Provide the person with brightly colored clothing.

            • Labeling: Label all doors. Use signs or symbols to explain the purpose of each room.

            • Secure trigger items: Some people will not go out without a coat, hat, kerchief, keys, wallet, etc.

            • Avoid leaving a person with dementia alone in a car.

Planning ahead

            • Keep a list of people to call when feeling overwhelmed. Have their telephone numbers in one location.

            • Ask neighbours, friends and family to call if they see the person alone or dressed inappropriately.

            • Keep a recent, close-up photo on hand to give to police.

            • Know your locality.  Pinpoint dangerous areas near the home, wells, ponds, open stairwells, dense foliage, tunnels, bus stops and roads with heavy traffic.

            • Is the individual right or left-handed?  Wandering generally follows the direction of the dominant hand.

            • Keep a list of places where the person may wander to, like past jobs, former homes or a place of worship or restaurant.

(Tips extracted from an official publication of Alzheimer's Association www.alz.org)

 

Unaware and Unprepared

The population of elderly in our country is growing and along with it the problems of an aging population.  While the general awareness about diabetes and heart disease is on the rise, not enough has been done to increase awareness about Alzheimer’s disease and other dementias.  We are both unaware and unprepared for the magnitude of the problem.

‘Dementia’ is one of the major causes of disability in older people.  It is a disorder of the brain that causes progressive and irreversible deterioration in the brain cells.  Affected persons lose their memory, ability to read and write, their ability to speak and even to understand or to make simple decisions.  Alzheimer’s disease is one of the common forms of dementia.  It is a slow disease.  It starts of mildly and ends up causing serious mental problems.   So far, there is no known cure for this disease.   Largely, it affects those over 65 years of age though in around 2% of the cases an earlier start has been observed.   Current estimate is that India has about 3.7 million persons with dementia.  With an aging population and people living longer these numbers will only increase.

Dementia does not affect just the patient but also their families.  As the patient’s brain starts losing its ability to perform various functions, they are gradually unable to care for themselves and it increases the demands on their caregiver.  In the early stages, the patient needs help getting dressed because they forget how to do this.  Gradually, they forget how to bathe, keep clean and this also has to be done for the patient.  In subsequent stages they will need help with the toilet and personal hygiene as they become incontinent.  They will need to be spoon fed as they forget how to eat.   In addition to all this, many patients tend to wander away or do something unsafe. They may lock themselves inside a room and not know how to open the door again.  Most patients also lose their inhibitions and may shed clothes at inappropriate times.  Some may get violent and aggressive while others may get paranoid or hallucinate. 

In India, doctors generally do not prepare the patient’s families for the practical problems they will face in caring for their patient.  This leaves them unaware and unprepared.  Caring for dementia patients can also be very difficult.  Usually it is the patient’s spouse (who is also old) or their children.  Children of such patients are adults with their own families and careers.  Often, such children will have to give up their well paying job to take care of their father or mother.   Such caregivers deal with a lot of emotions from anxiety, denial, depression to fatigue and health problems due to stress and lack of sleep, and experience social withdrawal and even guilt. In some families, giving up paying jobs to be at home to provide care also adds a financial burden.

The problem is compounded due to general lack of awareness about this condition. It is often not recognised in the early stages by family members or it is stigmatised by society as madness. So the patient’s family keeps themselves isolated from friends and neighbours when actually they need all the help they can get.   In the West, there are many facilities for the care of such patients and there are support groups that help caregivers of such patients.  Presently very little is being done in India for a problem affecting a large number of silent sufferers.  

To make a beginning, a new support group for caregivers of dementia patients has been started.   Log on https://sites.google.com/site/caregiversfriendmumbai/  to meet other caregivers of dementia patients.   Join in the discussion forum and talk to others about how they are coping.     In case you are a caregiver for a patient with dementia, please take heart that there are friends you can reach out to. Sharing experiences, information and suggestions goes a long way in reaching out to caregivers in their lonely labour of love.  For more information, write to me at caringmumbai@gmail.com.

How to disclose a diagnosis of Alzheimer's

It has been the experience of many caregivers that doctors in India do not explain the diagnosis sufficiently to the patients' families.  Many times families of patients have never heard of the condition before.  They do not know what to expect. Not all are savvy enough to google it. 

As the patient's condition deteriorates, the practical consequences of the progression of the disease become apparent to the families. They all learn to cope but with a lot of stress.  This can be avoided if an early diagnosis is provided an properly explained to the patients' families.

Alzheimer's Association (alz.org)  recommendes early disclosure of diagnosis to maximise quality of life.   Read the article here http://www.alz.org/professionals_and_researchers_diagnostic_disclosure.asp#covering

Need for an advisory Council on Dementia Research, Care and Services in India.

In the USA, there is an Advisory Council on Alzheimer's Research, Care and Services. The Council is a diverse group of stakeholders from the Alzheimer's community as well as delegates of federal agencies that have initiated dementia programmes.

They advise the Secretary of Health and Human Services on the development of a national strategy to address Alzheimer's disease. The council was created by the National Alzheimer's Project Act (NAPA), which was signed into law early this year by President Obama.

In the USA, they know the magnitude of the disease and its expected effects on the economy. They know the numbers affected, they have projections for the future, they know exactly what resources to commit and what to plan for.  Already they are fiercely debating on healthcare reform.

Only when so much attention is given can any difference made to the status quo, like in the Anna Hazare movement. In India, most of the statistics are both unreliable and outdated. Ask any NGO how many patients they have in their chapter cities and you will have your answer.

Most patients do not even get to a doctor at least not until well into the disease when treating in the early stages can be beneficial in slowing the progression of the disease. This is because the disease is not recognised early enough by the family members due to ignorance about the condition.  Also doctors do not collate reports into a national database for such patients. 

In Mumbai, when a person is diagnosed with dengue or malaria, the doctor has to inform the Corporation.  The health dept of the corporation visits the patient’s home and asks a few questions and ticks a few boxes on a form.   Some kind of data is being generated from this.    There should be a similar tracking done for dementia patients also.   A national database should be created and maintained by all stakeholders. Some reasons why this should be done are:

1.    The mean age of the country will only increase in the passing years.

2.    As of today, dementia is incurable, runs a long course even up to 20 years.

3.    Medical support involves financial cost.

4.    Care giving involves a social cost.

5.    To help plan for facilities, nursing aides, respite centres, hospitals etc

6.    Geographical plotting of cases could perhaps be interpreted in environmental terms.

7.    Will aid in medical research for cure/treatment in these diseases.

This country is plagued by various ills from corruption to terrorism to malnutrition.  The need for planning for dementia in old age is therefore on a lower scale of priority. Hence the need for a National Advisory Council to be constituted to advice the Health Ministry on policy decisions regarding this disease.

The Course and Outcome of Dementia

(Extracted from Dementia India Report 2010)

Dementia affects every person in a different way. Its impact can depend on what the person was like before the disease; his/her personality, lifestyle, significant relationships and physical health. The problems linked to dementia can be best understood in three stages. The duration of each stage is given as a guideline; sometimes people can deteriorate quicker, and at other times more slowly.

Early Stage: first year or two

The early stage is often overlooked. Relatives and friends (and sometimes professionals as well) see it as normal part of 'old age'. As the onset of the disease is gradual, it is difficult to be sure exactly when it began. The person may have problems talking properly (language problems), become lost in familiar places, have difficulty in making decisions, show mood changes, depression or anxiety and show a loss of interest in hobbies and activities.

Middle stage: second to fourth or fifth years

As the disease progresses, limitations become pronounced and more restricting. The person with disease has difficulty with day-to-day living and, may become extremely dependent on their family and carers and need help with personal hygiene like toileting, washing and dressing.

Late Stage: fifth year and after

This stage is one of near total dependence and inactivity. Memory disturbances are very serious and the physical side of the disease becomes more obvious. The person may have difficulty eating or difficulty walking, have bladder and bowel incontinence or be confined to a wheel chair or bed.

The Management of Dementia: The standard treatment goals are -
• Early diagnosis
• Optimization of physical health, cognition, activity and well being
• Detection and treatment of Behavioural and Pyschological symptoms of dementia
• Educating carer and providing long term support to carer

Acknowledgement :  Alzheimer’s & Related Disorders Society of India (2010). The Dementia India Report: prevalence, impact, costs and services for Dementia: Executive Summary. (Eds) Shaji KS, Jotheeswaran AT, Girish N, Srikala Bharath, Amit Dias, Meera Pattabiraman and Mathew Varghese. ARDSI, New Delhi. ISBN: