About 3.2 million people in India are affected by Alzheimer's and other forms of Dementia. By 2016 there will be 113 million people over 60 and above. Of which 10% of them over 65 and almost half of them over 85 will have the disease.
Dementia is a general term that describes a brain syndrome characterized by problems with memory, judgment, language, orientation, and executive functioning. Alzheimer's disease is the most common cause of dementia, but dementia can also be caused by strokes, Parkinson's disease, head injury, or a host of other conditions -- very few of which are reversible.
Alzheimer's is the most common cause of dementia -– in fact, almost two-thirds of dementia cases are due to Alzheimer's disease. However, a host of other conditions can also cause dementia, including the 10 described here.
1. Creutzfeldt-Jakob disease (CJD)
Sometimes referred to as mad cow disease, CJD is caused by slow viruses called prions, which are folded proteins that interfere with the brain's ability to function. Between 5% and 15% of CJD cases have a genetic link, usually affecting adults between 40 and 60 years of age. Still, CJD can occur at any time, and many cases have no genetic link; instead, the disease is transmitted through infected medical equipment in procedures such as corneal transplantation. Dementia due to CJD often progresses rapidly over several months and involves problems with attention, concentration, appetite, vision and coordination.
2. Head Trauma
Dementia due to head trauma can result from a single major head injury or from repeated head injuries, such as in professional sports. The degree and nature of impairment depends on the location and severity of the brain injury. People with dementia due to head trauma often experience amnesia, memory loss, irritability, attention problems, depression, apathy, and other personality changes. This kind of dementia is most common among young males who engage in risk-taking behaviors.
3. HIV/AIDS
HIV/AIDS can destruct the tissue and structures of the brain in such a way that dementia results. Common symptoms of dementia due to HIV/AIDS include forgetfulness, slowness, and difficulties with concentration and problem solving. Symptoms might also include apathy, delusions, and hallucinations. Because HIV/AIDS affects all ages, dementia due to HIV/AIDS can occur in children as well as adults.
4. Huntington's Disease
Huntington's disease is an inherited condition affecting cognition, emotion, and movement. It can occur as early as 4 years of age or as late as 85 years of age, but it usually develops in the late 30s or early 40s. The primary symptoms of dementia due to Huntington's are difficulty retrieving memories, problems with executive functioning, and impaired judgment. Memory problems become more severe as the disease progresses, and delusions and hallucinations may occur. Children of those with Huntington's disease have a 50% chance of also developing the disease.
5. Lewy Body Disease
Lewy body disease is characterized by deposits of the protein alpha-synuclein inside brain cells. These deposits impair perception, thinking, and behavior. The deposits are called Lewy bodies, named after Friederich H. Lewy, who first described the deposits in the early 1900s. Lewy bodies are also found in the brains of those with Parkinson's and sometimes those with Alzheimer's, making diagnosis more complicated. Three symptoms set Lewy body disease apart from other types of dementia: vivid visual hallucinations, fluctuating alertness, and severe sleep problems, including acting out one's dreams or making severe involuntary movements.
6. Normal Pressure Hydrocephalus
Normal pressure hydrocephalus occurs when there is an abnormal increase in cerebrospinal fluid in the brain's cavities, which puts pressure on the brain. In addition to typical symptoms of dementia, people with dementia due to normal pressure hydrocephalus often experience problems with walking and balance, as well as impaired bladder control.
7. Parkinson's Disease
Parkinson's disease is a neurological condition affecting movement by creating tremors, rigidity, and other problems with balance and motor skills. In the advanced stages, Parkinson's often affects cognitive functioning, resulting in dementia in 20-60% of those with the disease. Dementia due to Parkinson's involves difficulty retrieving memories, depression, and problems with executive functioning. Interestingly, some people with dementia due to Parkinson's have been found upon autopsy to also exhibit brain pathology indicating Alzheimer's disease or Lewy body disease.
8. Pick's Disease
Pick's disease is the most common of the frontotemporal dementias, which affect the frontal and temporal (side) lobes of the brain. Most commonly occurring between 50 and 60 years of age, Pick's disease involves drastic personality changes, deterioration of social skills, and a lack of empathy and emotion. These signs usually occur before problems with memory and other typical signs of dementia. In the advanced stages of the disease, the person may become extremely apathetic or agitated, to the point that conducting a diagnostic workup is too difficult.
9. Vascular Dementia
Vascular dementia is the second most common form of dementia and results from impaired blood flow to the brain. This can occur either by a narrowing or complete blockage of blood vessels in the brain, which deprives brain cells from the nutrients and oxygen they need to function. Vascular dementia can result from several small strokes that occur over time, after a single major stroke, or from conditions that don't block blood vessels, but simply narrow them, such as diabetes or hypertension. Vascular dementia often progresses in a step-wise fashion. For example, the person might stabilize for a period of time, then suddenly get much worse, then continue to alternate between stable periods and sudden drops in functioning.
10. Mixed Dementia
A brain syndrome caused by more than one disease process. The most common mixed dementia is a combination of vascular dementia, where blood flow to the brain is compromised by a stroke or other circulatory condition, and Alzheimer's disease. While it's often assumed that a person's dementia has a singular cause, diagnosis is much more complex due to the high incidence of multiple medical conditions among older adults. Sometimes, dementia is due to multiple medical conditions. In these cases, it's often called mixed dementia. The most common form of mixed dementia is due to both Alzheimer's and vascular disease. Because dementia can be due to so many disorders, obtaining an accurate diagnosis is imperative in order to properly treat the dementia.
Dementia In India
How many people have dementia in India ?
India is the country with the second largest aged population in the world. Statistics show that by 2020, 1 out of 11 persons will be aged over 60 years. After the age of 60, the incidence of dementia doubles with every five years of age. There are approximately over 3.2 million people affected by Dementia in India today.
The state of West Bengal has an estimated 40 lakhs of elderly population over the age of 65 of which 80,000 suffers from Dementia. The city of Calcutta has about 2.3 lakhs of elderly over the age of 65 of which nearly 46,000 are victims of this dreaded disease. And 18 million people are affected all over the world. As far as is known the disease occurs equally across all groups in society.
What is the prevalence of dementia?
Age Prevalence
40-65 1 out of 1,000
65-70 1 in 50
70-80 1 in 20
80+ 1 in 5
The number of families affected in India increase at a faster rate. The available data shows that by 2020, India will be the most affected country in the world with a vast number of persons with dementia.
However, at present there is limited awareness of dementia , Inadequate training for formal carers and a lack of support for informal carers, Inadequate human and financial resources and limited policy on dementia care.
Although there is currently no cure, there are ways to reduce risk factors, treat and manage the behavioural and psychological signs and symptoms of dementia and improve quality of life for the individual and family carer, through:
• Promoting an understanding of what is quality dementia care is,
• Prevention and early diagnosis/intervention;
• Guidance to use of medications (pharmaceutical and natural) to treat cognitive decline and memory loss;
• Psychosocial approaches including support, counselling, education and memory loss programs for people with dementia and informal families/carers;
The practical implications of the Dementia population for India are far-reaching. The numbers are increasing, the resources are limited and perceived social priorities lie elsewhere. Hence, the response to such demands has to be well orchestrated and based on systematic planning. ARDSI Calcutta has taken the first step in this regard in the Eastern region of India and expect your help as they move ahead to continue providing quality care to Dementia population.
•10 Warning Signs of Alzheimer’s
To help you know what warning signs to look for here is a checklist to review. See a physician for complete examination if you make several checkmarks.
•Recent memory loss: It is normal to occasionally forget assignments, colleague’s names, telephone no. and then remember them later. Those with the disease will forget these things more often and will not remember them later.
•Difficulty performing familiar task: Busy people can be distracted time to time that they may leave the soup on the stove and forget to serve only to remember it at the end of the meal. People with Alzheimer’s could prepare a meal and not only forget to serve it, but also forget they made it.
•Problems with language: Everyone has trouble finding the right word sometimes, but this victim may for get simple words or substitute inappropriate words making his/her sentences incomprehensible.
•Disorientation of time/place: It is normal to forget the day of the week or your destination for a moment. But people with Alzheimer’s can become lost on their own street not knowing where they are, how they got there or how to get back home.
•Poor or Decreased judgment: People can become so immersed in an activity that they temporarily forget the child they are watching. People with Alzheimer’s could forget entirely the child under their care. They may also dress inappropriately wearing several shirts or blouses.
•Problems with abstract thinking: Balancing a checkbook may be disconcerting when the task is more complicated than usual. Someone with Alzheimer’s disease could forget completely what the numbers are and what needs to be done with them.
•Misplacing things: Anyone can temporarily misplace a wallet or keys. A person with Alzheimer’s may put things in inappropriate places: an iron in a freezer or a wristwatch in a sugar bowl.
•Changes in mood or behavior: Everyone becomes sad or moody from time to time. Someone with Alzheimer’s can exhibit rapid mood swings from calm to tears to anger for no apparent reason.
•Changes in personality: People’s personalities change somewhat with age. But a person with Alzheimer’s can change drastically becoming extremely confused, suspicious or fearful.
•Loss of initiative: It is normal to be tired of housework, buisness activities or social obligations but most people will regain their initiative later. The person with Alzheimer’s may become very passive and require cues and prompting to become involved.
THE CHALLENGE OF DEMENTIA & ARDSI CALCUTTA TOGETHER CAN MAKE A DIFFERENCE
Dementia epidemic: Dementia, a predominantly old-age debilitating neuro-psychiatric disease, is the biggest irony of living long and constitutes the flip side of the tremendous advancement in the medical sciences and health care which has pushed up life expectancy. As the world demography undergoes a definite change in the age profile, with the number and the ratio of old people (60+) in the total population constantly rising, dementia is fast approaching to hit the world in a proportion of epidemic. Every seven seconds one new incidence of dementia is taking place in some part of the globe. It has been projected that the Asia Pacific region will be the hardest hit region in this imminent epidemic. China will be the worst hit country. India will earn the dubious distinction of emerging second, next only to China, in the dementia map.
Year 2050
Region/ Prevalence Incidence Projection
World 30 4.6 100
AsiaPacific 14 4.3 65
China 5.5 1.7 27
India 3.5 1.0 16.5
Notes: All figures are in million. Prevalence is the estimated current total number of people inflicted by dementia and Incidence is the current rate of rise of dementia population per year. Ref: ADI, Access Economics study (2006)
According to a study by the Indian Council for Medical Research, there is an estimated 40 lakh elderly population in West Bengal, out of which 80,000 are having dementia. The figures for the city Kolkata are 2.3 lakh and 46,000, respectively. Age is the single most important risk factor for dementia. The probability of having dementia increases steeply with the increase in age. Those aged over 60 in the Asia Pacific will increase from under 10 per cent now to 25 per cent of the total population by 2050, and those over 80 years will increase five times - from 1 per cent to 5 per cent. So dementia epidemic is a certainty.
Disease burden: A comparison with the leading diseases in the Asia Pacific region reveals that dementia scores quite high in terms of 'burden of disease', a concept developed by Harvard School of Public Health in association with the World Bank and the World Health Organisation to assess the extent of loss of health, life and wellbeing due to mortality, morbidity and disability. Burden of Disease = Mortality Burden + Morbidity and Disability Burden. Nearly 100 million Daly's (One DALY - Disability -Adjusted Life Year - represents loss of one year of equivalent full health; Daly's for a disease are the sum of the years of life lost due to premature mortality in the population and the years of healthy life lost due to disability) are lost each year due to neuro-psychiatric conditions, which is the second highest source of disease burden after infectious and parasitic diseases, and higher than cardiovascular disease, injuries, prenatal disorders or cancer (neoplasm's). Within neuro-psychiatric conditions, at present depression ranks 1st (with 38.5% of disease burden, i.e., 38.5% of 100 million Daly's) and dementia comes 6th (with 5% disease burden). But dementia is fast racing to overtake depression as the leading source of disability by 2016. In the Asia Pacific, dementia accounts for a disease burden almost similar as that from all tropical diseases taken together, and higher than malaria, tetanus, breast cancer, drug abuse or war. The disease burden from dementia is projected to increase by over 76 per cent over the next quarter century. To get a complete assessment of loss of life, health and wellbeing due to dementia, we need to factor in the indirect disease burden generated by dementia in the form of acute stress, strain, trauma, depression and other diseases and disorders the family carers are so prone to develop. As dementia warrants 24x7 intensive care and negotiating various psychological and behavioural abnormalities, the individual, social, professional and economic life of the family care givers are shattered and they themselves tend to develop various psychological disorders and stress-related diseases.
Economic impact: The deflating impact of the high disease burden of dementia on the national production is easily comprehensible. However, we do not yet have any ready statistics about this and a comprehensive study in this regard should be commissioned. Dementia has the potential to have a devastating impact on the public health systems. This is not only because of the graying of the population but because dementia is among the most disabling chronic diseases. Quantification of costs in the public health care sector to be thrust upon by dementia epidemic varies widely with the country and various other factors like the level of health care a country enjoys at present, the mix of care, etc. However, costs will definitely rise relative to gross domestic product as prevalence increases. A study on the Asia Pacific has estimated the cost of dementia at $60.4 billion (in 2003 US dollar). More cost studies are required, specially for our country. As sensitivity to the impending dementia epidemic is at a pathetically low level in India, we cannot escape a high cost in tackling the menace. It is urgently needed that our nation becomes aware of the problem, specify the challenges, draw up a cost-effective prioritized action plan and start implementation without making any further delay. Since age is the single most important risk factor for dementia, and old people unfortunately constitute one of the weaker sections of the society, the problem gets obviously compounded. The present socio-economic and lifestyle realities and value systems like urbanisation, trends away from extended families and towards nuclear families and the increasing number of older people who thus live alone, labour and job mobility with increasing number of children staying away and abroad, a somewhat negative perception about spending in geriatric care that is prevalent at both individual and social levels, etc. create serious hurdles to tackling dementia and exacerbate the social and economic impact of dementia.
Challenges and roadmap for tackling dementia
Leaving aside the most fundamental challenge of finding a cure therapy for dementia, the roadmap for tackling dementia and its progression towards an epidemic-like situation can be laid out as follows.
Prevention: It has been seen that the most effective way to make savings on dementia costs would be if the onset of dementia could be delayed or incidence reduced through prevention approaches arising from new research. So people have to be made aware of the preventive measures.
Early diagnosis: Early diagnosis and early intervention go a long way to slow down the process of degeneration and improve quality of life. Early diagnosis is thus a pre-requisite for better care and treatment.
Appropriate care: Till date we do not have any cure drug for dementia. Treatment of the irreversible progressive degenerative diseases causing dementia essentially means trying to (i) slow down the pace of progression of the disease, (ii) give symptomatic relief and (iii) ensure wellness or quality of life as much and as long as possible. This is done through administration of medicine and provision of proper care. In the present state of affairs, where we do not yet have a cure drug for dementia, care assumes the most significant aspect of its treatment. For no other disease perhaps, care is as important as it is for dementia. Care here is not only a supportive aspect of the course of treatment, it constitutes the core. If dementia can be diagnosed early and in the early and middle stages of the disease, appropriate care contributes positively and in good amount towards retarding the deterioration and ensuring a better quality of life. So provision of quality specialised dementia care at affordable prices assumes a very special significance.
Support for family care givers: Dementia care giving is a hard specialised 24x7 task. Family care givers are the main characters in the care chain. They need to be supported emotionally and technically. They need regular respite to rejuvenate their health and energy so as to enable them to give quality care over a long period and maintain their own physical health and mental fortitude. They also need time off caring task to meet their individual, social and professional obligations.
Please Visit : www.alzheimrindia.org for more details.
Prevention :
Risk Factors:
Caregiving Tips:
Twelve Steps for Caregivers for a Person with Dementia
1. Although I cannot control the disease process, I need to remember I can control many aspects of how it affects my relative.
2. I need to take care of myself, so that I can continue doing the things that are most important.
3. I need to simplify my lifestyle so that my time and energy are available for things that are really important at this time.
4. I need to cultivate the gift of allowing others to help me because caring for my relative is too big a job to be done by one person.
5. I need to take one day at a time rather than worry about what may or may not happen in the future.
6. I need to structure my day because a consistent schedule makes life easier for me and my relative.
7. I need to have a sense of humour because laughter helps to put things in a more positive perspective.
8. I need to remember that my relative is not being difficult on purpose; rather that his behaviour and emotions are distorted by the illness.
9. I need to focus on and enjoy what my relative can still do rather than constantly lament over what is gone.
10. I need to increasingly depend upon other relationships for love and support.
11. I need to frequently remind myself that I am doing the best that I can at this very moment.
12. I need to draw upon the Higher Power, which I believe is available to me.
Communication Strategies for persons with Dementia
Ref: Ripich and Ziol (1998)
Link: http://www.alz.co.uk/carers/
ADI Help for Carers
