Caring for a patient who is a smoker

Smokers and second hand smoke has been a hot topic of discussion for years around the world.   Non-smokers usually hate it when people light up and blow smoke into the air they breathe.  Smokers argue that they have every right to smoke if they want to.  Meanwhile, Governments across the world are busy legislating on who can smoke and who cannot, when and where they can or cannot smoke. While the debate continues in the outside world, look into the small world of the caregiver who has a smoker for a patient.

The patient is perhaps in mild to medium stage of cognitive decline.  He has been a smoker all his life and this is a habit that is difficult to break even for one with completely intact mental faculties. Like many others, perhaps the patient too started smoking because it was considered cool to light up and got hooked to the habit. 

Usually caregivers might look at this from the patient’s perspective:  

• he lost many valuable memories and his independence
• he feels disturbed and depressed with the knowledge that his memory is failing him
• he exhibits his frustration that he/she is now dependant on caregiver(s). 

Perhaps caregivers would ask themselves philosophically, when decline has already started and death is certain, why should small pleasures like smoking a cigarette be denied to him?  So let the patient be allowed to smoke. Right?

Wrong.  There is sufficient medical research that suggests that smoking is dangerous in any circumstance to physical health. 

Extract from the Journal report Heavy smoking in midlife may be associated with dementia in later years  from the Archives of Internal Medicine, 2010 (JAMA and Archives Journals 2010, October 25).  The authors confirm “Smoking is a well-established risk factor for stroke, and may contribute to the risk of vascular dementia through similar mechanisms.  In addition, smoking contributes to oxidative stress and inflammation, believed to be important in the development of Alzheimer's disease….It is possible that smoking affects the development of dementia via vascular and neurodegenerative pathways," 

Additionally, it has also been suggested that smoking accelerates mental decline.  This is sufficient reason to stop your patient from smoking.    This is sufficient reason for anyone to stop smoking because unlike age and genetic factors, smoking is one contributing risk factor for dementia that we can change.

Importantly, consider the health of the primary caregiver. The caregiver would of necessity be exposed to unnecessary second hand smoke.  It will destroy the health of the caregiver(s) who already compromise on their well-being to take care of the patient.    It is a fact that exposure to toxins in second hand smoke can cause asthma and cancer.  An online study published by The British Medical Journal says “Breathing second-hand smoke can increase the risk of developing dementia and other forms of cognitive impairment in adults by as much as 44%.”      

So this is not just about indulging the patient, it is about the well-being of the caregiver.   Smoking should be actively discouraged.  Patients with dementia may forget that they have already had their smoke and insist on another one and then another finally ending up demanding cigarettes at all hours and becoming chain smokers.    It is hard enough to deal with a patient who has dementia.  It will probably get worse when they want their nicotine fix and they have to be denied it outright.  

But people can quit smoking.  Today no one has to quit cold turkey, there are prescription medicines, nicotine patches, lozenges available to wean away from lighting up a cigarette.   In cases of mild to moderate cognitive decline, some group counselling sessions may also be of help.

Apart from the health issues, there is also the ever present danger that a casually discarded cigarette could set the house on fire as people with dementia are less likely to carefully extinguish their cigarette.

What caregivers can do to minimise the smoking and the dangers it presents

1.  Discourage smoking by hiding away all visible reminders of smoking like cigarette packs, lighters, match box, ash trays.  It is possible that with these triggers away from sight the patient may forget about smoking.

2.  Do not to allow others to smoke in the presence of your patient to prevent memory triggers

3.   Discard shallow ashtrays and get new deep containers to use as ashtrays in which you can fill water at the bottom as an added precaution.   These should be used to submerge ashes and cigarette butts before throwing into the garbage bin.

4.   Do not allow smoking inside the house while sitting on the couch and never ever on the bed. 

5.  Take it outside. Smoking in the verandah while seated at a table is safer than smoking indoors.

6.   Do not allow the patient to step outside the house unaccompanied for a smoke. 

7.   Contact your family physician and enquire about pharmacological remedies available to quit smoking.

You have to help your patient to quit smoking for his own better health and yours.

Are you claiming this income tax deduction?

A deduction is allowed under Section 80 DDB of the Income Tax Act for Treatment of Specified diseases

The following diseases are covered -

·         Neurological Diseases (where the disability level has been certified as 40% or more)
- Dementia
- Dystonia Musculorum Deformans
- Motor Neuron Disease
- Ataxia
- Chorea
- Hemiballismus
- Aphasia
- Parkinsons Disease

·         Malignant Cancers

·         Full Blown Acquired Immuno Deficiency Syndrome (AIDS)

·         Chronic Renal failure

·         Hematological disorders
- Hemophilia
- Thalassaemia

Deduction is allowed for costs incurred on the treatment of above specified illnesses to a resident taxpayer – individual or HUF in India (i.e. NRI cannot claim this deduction).  

This deduction is allowed for treatment of self, spouse, children, siblings, and parents, wholly dependent on you.  However, if you have availed any reimbursement for the treatment from your insurance company or employer, the deduction under this section shall be reduced by the amount received under insurance or reimbursed by the employer.

 The deduction will only be allowed on submission of a certificate as proof for the specified ailment from a neurologist, an oncologist, a urologist, a haematologist, an immunologist or such other specialist as may be prescribed, working in a government hospital.    This certificate is to be provided in the prescribed Form 10-I. See link.  http://law.incometaxindia.gov.in/DITTaxmann/IncomeTaxRules/pdf/itr62Form10I.pdf

The amount of deduction allowed is

-          Actual sum paid for the medical treatment subject to a maximum of Rs. 40,000.

-          Where the actual sum paid for the medical treatment is in respect of a senior citizen (age 65 years or more), the upper limit is higher – Rs. 60,000.

To claim this higher deduction of Rs 60,000 proof of age of the patient is required.  

Salaried tax payers can include this deduction along with investment declaration provided to their employer around this time of the year.  This will ensure the deduction is taken care of in the TDS calculation and reflected in your Form 16.

Sorting through memories

It will soon be six months since my Dad passed and I haven’t yet sorted through all his ‘stuff’.  It had taken me over two months after his passing to move his toiletries out of the bathroom.    It just did not occur to me earlier that we would not need them anymore.

Going over some of his other things last week, I came across carbon copies of letters neatly preserved in a box.  Most were of the mundane sort addressed to banks, utility companies or local authorities.   My Dad had kept a copy of his correspondence using a carbon paper and had preserved the copies in this box and I felt compelled to read them all.  These were hand written in the seventies and early eighties and I marvelled at his neat script, at how well he had written without an erasure or over writing and at his command over English though it had not been his medium of instruction at school.  The way the copies were arranged in the box reminded me what a tidy hoarder he had been.    Everything neatly folded, labeled, packed and kept. Nothing discarded.

I am afraid that my real memories of my Dad before he had dementia are getting dim.   Most of my memories are only of the last few years, the times when he spoke  less and needed complete care.   Perhaps the regular regimen of caring for him has actually replaced the memory of him from the earlier times.   

We realized that we had very few photographs of our mother only after she died suddenly.  Therefore, we consciously took more photos of  Dad. This was easier with the advent of cameras on mobile phones in the last few years.  However, even these are only from his dementia period.   Has his dementia robbed us of our own memories of the time before he lost his?

If I could put the clock back, I would make many more photos and videos of my parents in the days before  Dad had dementia.  Technology allows it now.   Dementia as they say is a long goodbye and in the daily routine of care giving, we forget to put aside memories of the good times and even the good days for us to look at and remember after they are gone.   Without these, the only picture that remains in our mind’s eye is the way we saw them in their last days.  

I put back the carbon copies of his letters back in the box and in the “to keep pile” because I have not the heart to get rid of them.   Did I keep these to remind me there was a time when he did not have dementia, or perhaps I am turning into a little hoarder myself?  Sorting through memories is such hard time consuming business.

Support groups for caregivers

Swapna writes “We caregivers can form our own communities.”     This is a simple solution to many problems faced by dementia caregivers.  

There was no functioning support group to help when we needed it most in the early stages of my Dad’s illness.  The doctors had not cautioned us about wandering and incontinence.  We did not know what we were facing.  Though we found much information online, there was very little in the Indian context.   Support groups were non-existent in my city.  We struggled to cope.

I had chance meetings with other caregivers at doctor’s clinics or a phone number passed on through friends of friends who had heard of others with similar ‘problems’.  I grasped at these and made contact and found they were just as happy to make my acquaintance.  

We shared notes, gave each other tips on the day-to-day challenges, and marvelled at some ingenious solutions.  Most importantly, it gave us a chance to talk to someone who understood.    It was a revelation to know the greater challenges some other caregivers had to deal with in the face of which my own patient management issues were small potatoes.    Some had real financial issues, in-law trouble, trouble at their work place all caused by the illness that affected their family member.  I could not offer them solutions, but they often only wanted to think aloud what they could not discuss with anyone else they knew without being judged or criticised.

There are many aspects to a long-term illness like dementia.   The challenges and stress are different at every stage of the disease.   There can be no ‘model’ or ‘one-size-fits-all’ solution.  Nevertheless, the learning of each caregiver can be shared to form a collective pool of knowledge.  

Without this, as Swapna says, “Every family is forced to reinvent the wheel..... Communities where we are able to talk about situations, and hear from others whether they’ve faced similar situations, what could have caused it, what worked, what didn’t work  ....Caregiver communities collectively enable caregivers to become better and more informed caregivers.”

This is why we need a forum- a bulletin board where topics are presented in threaded fashion.  It would greatly help newbie caregivers tap into the vast pool of knowledge that  caregivers with experience can help create by contributing and sharing online.   It would be easy to search through bulletin board conversation threads to find the situation that is most similar to their own.  They could also post their queries and be readily helped by experienced caregivers.  This will ensure that the experience and body of knowledge gained over years of care-giving in diverse situations remains intact.   It is for this reason, a bulletin board exists at 

http://caregiverfriend.phpbb3now.com/viewforum.php?f=2

Please visit this forum, join, share your experiences, tips, suggestions anything else that will help build this collective body of knowledge that we as caregivers share.

Read Swapna’s blogpost about online caregiver support groups at  http://swapnawrites.wordpress.com/2011/11/11/online-caregiver-communities-for-dementia-care-supporting-each-other/

Tips for seaching for a missing person with dementia

Despite all the precautions one takes, it is possible the person with dementia may wander off unnoticed.  Here are some tips for searching a missing person with dementia.

•  Look within a one kilometer radius of where the patient was before they wandered.
• Check dangerous areas first near the home, ponds/lakes/wells, forested areas, tunnels, bus stops, terrace of buildings and water tanks, and roads with high traffic.
• Look within a hundred feet of a road, as most wanderers start out on roads and remain close by.  Check bushes, ditches and nullahs carefully as the person may have fallen or become trapped.
• Search in the direction of the wanderer’s dominant hand. People usually travel first in their dominant direction. (ie. right handed person would turn right – usually)
• Investigate familiar places, such as former residences or favorite spots. Often, wandering has a particular destination.
• If you suspect that the person used a car or public transportation, you’ll need to consider likely places that are farther afield.
• Contact as many people as you can to enlist their help in searching and locating the missing person soonest.  If the missing person remains stuck in a place they are unable to get out of, they may get dehydrated or hypothermia.
• Remember the dementia patient may not call out for help or even respond to your call.    

Over Half of Alzheimer’s Cases May Be Preventable, Say Researchers

Researchers say over half of all Alzheimer’s disease cases could potentially be prevented through lifestyle changes and treatment or prevention of chronic medical conditions.   The biggest modifiable risk factors for Alzheimer’s disease are, low education, smoking, physical inactivity, depression, mid-life hypertension, diabetes and mid-life obesity.   Read more here http://www.dementiatoday.com/2011/10/21/over-half-of-alzheimer%e2%80%99s-cases-may-be-preventable-say-researchers/

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.