For Volunteers and Participants

Frequently Asked Questions on Alzheimer’s Disease and Dementia

1. What are the common symptoms of Alzheimer’s disease?

Dementia is a term used to describe a group of symptoms affecting memory, language, planning, thinking etc., to an extent that affects normal day-to-day life. It isn’t a specific disease, but several diseases can cause dementia. Alzheimer’s disease is the most common cause of a dementia in older adults, but there are a number of other causes of dementia.

The common symptoms of Alzheimer’s disease (AD) are forgetfulness, difficulties in thinking, understanding and concentrating, disorientation, and inability to recognize common things or recollect common words – to an extent that affects normal day-to-day life. AD may also be associated with behavioral symptoms like aggression, apathy, loneliness, mood swings, and repetition of words. The severity of the symptoms and frequency of occurrence vary from one individual to another.

2. Is dementia inevitable in old age?

Dementia is not inevitable. It is true that as we age some memory can be experienced, however, these memory losses tend to be less severe, occasional and do not affect day-to-day activities. Only some of them and not all experience dementia.

3. When does dementia start?

Dementia usually starts after the age of 60 years. After 60 years of age, the chance of getting dementia has been found to increase every decade. In rare cases, such as familial Alzheimer’s disease or early-onset Alzheimer’s disease, the onset of dementia happens around 50 years.

4. If dementia usually starts only around 60 years of age, why does CBR recruit volunteers who are 45+ years old?

Recent research has shown that changes in the brain associated with dementia and other neurodegenerative disorders begin several decades prior to the onset of clinical symptoms. It would be important to study these early changes in order to effectively understand the risk factors and protective factors for dementia. Therefore, CBR recruits healthy volunteers above the age of 45 years.

5. I read that currently there is no cure for Alzheimer’s disease. If there is no cure, why is the study conducted?

Globally, extensive efforts to discover/formulate drugs to cure Alzheimer’s disease are underway. As the saying goes, prevention is better than cure. Since there is no cure for Alzheimer’s disease yet, identifying the risk factors and taking preventive measures against these risk factors would help in reducing the risk of the disease. Hence, through our research, we aim to identify and characterize the risk factors for dementia.

6. Is there any scope for reversal of the damage with proper medication?

Alzheimer’s disease is a progressive neurodegenerative disease in which due to various reasons neurons die and it cannot be reversed. However, with some type of medicines such as, cognitive enhancers, we can slow down the progression of the disease in the earlier stages of the illness.

7. How to address the stress on care givers?

Caring for someone with Alzheimer’s disease or another type of dementia can be a long, stressful, and intensely emotional journey. As our loved one’s cognitive, physical, and functional abilities gradually diminish over time, it is natural to become disheartened, overwhelmed, and neglect our own health and well-being. There are several healthy practices that caregivers can adopt to look after their own physical and emotional health.

Self-care is the practice of looking after our own health; this could be through exercising regularly, eating healthy foods, taking breaks, socializing, and engaging in some relaxation meditation or mindfulness activities.

The second step is to set SMART goals for care-giving: goals that are Specific (well-defined and clear), Measurable (there is a criterion that measures progress towards the goal), Achievable (attainable), Realistic (within reach) and Timely (has a well-defined timeline). An example of a SMART goal: say you want to help your loved one to walk to the gate of your house to pick up the newspaper every morning. You could measure this goal by looking into the level of assistance they needed or the time they took to stand up, and set a realistic timeframe (say, 2 or 3 weeks) to expect improvement.

One could also consider consulting a mental health professional (a psychologist or a psychiatrist), if required, because reaching out for help is crucial. It is important to realize that only when we are healthy and are taking good care of ourselves can we care for another person.

8. How can a family manage or handle elders suffering from dementia?

While there is no clear cure for dementia as of now, researchers around the world are working towards treatments that can delay the disease and improve the lives of millions. While it is a long and challenging road ahead for a caregiver of a dementia patient, being positive and hopeful through the process goes a long way. Treatment begins by attempting to enrich the environment and daily activities of the person with dementia. Attempting to engage the patient in activities they previously enjoyed (keeping in mind diminished cognitive capacity) is important. Sometimes, they might respond better to a non-family caregiver when it comes to initiating and participating in activities. Community-based day programs are spaces for patients to engage in a variety of social, cognitive, and physical activities. Caregivers can provide positive feedback and ‘rewards’ for engaging in activities can often help to ensure sustainability of benefits.

9. How/where do we find care-givers?

In India, most people with dementia are cared for by family members. A secondary caregiver may be hired to provide additional care. Live-in caregivers provide an alternative to residential homes and allow the patient to continue to live at home throughout the duration of the disease. The following link offers a consolidated list of resources for dementia care in India: https://dementiacarenotes.in/resources/india/

10. Are there health schemes to support persons with disabilities/dementia?

Currently there are no specific health schemes for individuals diagnosed with dementia. However, a person with Dementia who has a disability greater than 40% is considered as having ‘Benchmark Disability’ under the Rights of Persons with Disabilities (RPwD) Act, 2016. Under this Act, a person with Benchmark Disability can avail welfare and social benefits such as the Niramaya Health Insurance. It is a government-run health insurance scheme targeting persons with disabilities (PwD) in lower or middle socioeconomic status; it is an affordable health insurance to PwD with a maximum coverage of up to INR 1 Lakh. Most of the health insurance schemes, such as the Ayushman Bharat – Pradhan Mantri Jan Arogya Yojana (PM-JAY) offered by the Government of India for PwD cater to specific populations (rural or Below Poverty Line).

11. What is the government’s action on dementia care?

India does not yet have a national dementia plan to transform national dementia care and support. However, there are a few good models of practice, such as the Kerala State Initiative on Dementia, which could easily be replicated in other parts of the country. This initiative used a public-private partnership model linking various government departments to Alzheimer’s and Related Disorders Society of India (ARDSI) which is a non-profit organization working to create a dementia-friendly society.

In response to the growing number of people affected with dementia at the state and national levels, The Dementia India strategic plan is envisioned as an initial step to bring transformation in ensuring comprehensive dementia services. This outlines the government’s plan to commit resources that are necessary to address the problems of dementia. This national strategic plan is expected to receive a commitment from the government on yearly basis for funding, capacity-building, and research to transform the dementia care and support services at state and national levels.

12. Is there any relationship between cardiac disease and dementia?

Research has shown that people with cardiovascular risk factors such as cardiac arrest, stroke, high blood pressure, and dyslipidemia, have higher chance of developing dementia.

13. Should therapy include mental activities?

Psychotherapy, also called just “therapy,” is a form of treatment aimed at relieving emotional distress and mental health problems provided by any of a variety of the trained professionals such as psychiatrists, psychologists, social workers, or licensed counselors. There are different kinds of therapy. One among them is cognitive stimulation which involves mental exercises that aim to redress cognitive deficits, the most prevalent element of suffering in dementia. Evidence suggests that CST may benefit people with mild to moderate dementia.

14. Can we try electrical stimulation for Alzheimer’s disease?

Electrical stimulation such as Deep Brain Stimulation (DBS) is used to treat various mental health issues such as depression. Its potential to treat Alzheimer’s disease is still being explored through research; however, it is currently not approved for the treatment of Alzheimer’s disease. For any form of treatment/disease management, it would be best to follow the advice and prescription of a registered specialty doctor.

15. What is the role of stress in the onset of Alzheimer’s?

Chronic stress may be one of the factors involved in the development of Alzheimer’s disease. Stress increases the chance of getting dementia. Stress alone may not cause Alzheimer’s disease, but it’s likely one factor among many that determines whether the symptoms of Alzheimer’s disease will manifest earlier or later if someone was already going to get the disease. People with high levels of stress may have less of an ability to cope with the pathological changes of Alzheimer’s disease and their symptoms may be more prominent than those without high stress levels. People can reduce stress by exercising, developing good sleep habits, and setting aside time for relaxation.

16. Does staying alone with limited interactions with others contribute to Alzheimer’s disease?

Some studies show that lack of social interaction is known to be associated with dementia. Loneliness and social isolation in older adults are serious public health risks affecting a significant number of people and putting them at risk for mental conditions such as depression and anxiety. Several research studies show that those with higher levels of social interaction were less likely to develop dementia. Some research has shown that having a large number of friends might not necessarily be the factor that reduces the risk of dementia. Rather, it’s the quality, satisfaction, support, and reciprocity (give and take) of the relationships that are the important factors in reducing the risk.

17. Will reading help?

Reading stimulates and exercises the brain, which helps in creating new neurons. Hence, it could improve memory and boost cognitive functioning.

18. Where can we find financial help for people with Alzheimer’s disease or their caregivers?

Pradhan Mantri Jan Arogya Yojana (PMJAY) is the world’s largest health assurance scheme, aimed at providing a health cover of INR 5 lakhs per family per year for secondary and tertiary care hospitalization which also includes dementia. However, only vulnerable and BPL families are eligible for this scheme.

Section 80DDB of income tax act provides tax deduction to individuals for medical expenses incurred for treatment of specified diseases or ailments such as dementia. A maximum deduction amount of INR 40,000 can be claimed by individuals who are less than 60 years of age, and a maximum of INR 1 lakh can be claimed by senior citizens.

19. I heard that pranayama and yoga reduce the risk of dementia. Does CBR study the role of pranayama?

The ongoing studies at CBR are observational studies and do not include pranayama/yoga or any other interventional component. Going forward, CBR is planning to conduct a multimodal interventional trial for the prevention of dementia. The objective of the trial is to understand the potential effects of interventions such as physical exercises, brain exercises, diet, mindfulness, yoga and the control of cardiovascular risk factors on dementia.

20. Are there mobile apps which can be used for improving cognitive ability?

Cognitive stimulation is known to help one’s cognitive ability and performance. It is good to stay active mentally by various modes such as reading, engaging in hobbies etc. Due to advancement in technology one can also use mobile applications to keep oneself active mentally. There are few mobile apps such as Lumosity, Peak, Elevate, and Cognifit Brain Fitness which claim to improve cognitive ability. Basic versions of these applications are available for free.

21. Is SCA2 curable?

SCA2 (Spinocerebellar ataxia type 2) is a condition involving progressive problems with movement, coordination, and balance. It cannot be cured but can be managed to a certain extent.

22. How many drugs are under trial currently?

In June 2021, the Food and Drug Administration (FDA) approved Aducanumab (Aduhelm) for the treatment of some cases of Alzheimer’s disease. The medicine was approved in the United States because it removes amyloid plaques in the brain. But it hasn’t been widely used because studies about its effectiveness at slowing cognitive decline are mixed and coverage is limited.

Lecanemab – A phase 3 clinical trial found that the medicine slowed cognitive decline in people with early Alzheimer’s disease by 27%. Lecanemab works by preventing amyloid plaques in the brain from clumping. It is under review by the FDA and could become available in 2023.

Saracatinib – A drug initially developed as a possible cancer treatment is now being tested for Alzheimer’s disease. In mice, the drug turned off a protein and this allowed synapses to start working again; the animals experienced a reversal of some memory loss. Human trials for Saracatinib as a possible Alzheimer’s disease treatment are now underway.

23. Is the usage of mobile phones and hearing gadgets like earphones harmful in terms of dementia risk?

The usage of mobile phones or other electronic gadgets is not directly linked with dementia risk; however, the usage of gadgets should be controlled as much as possible to avoid undesirable effects on one’s social and/or mental health besides the impact on physical health.

* Disclaimer: These responses to FAQs are being shared merely for awareness and educational purposes. While every precaution has been taken to ensure that content is both current and accurate, the Centre for Brain Research assumes no responsibility or liability for any inadvertent errors or omissions in the response, or for the results obtained from the use of this content. The information is provided on an “as is” basis without any guarantee of completeness, accuracy, or timeliness. It is not to be treated as a substitute for professional medical advice, diagnosis, or treatment.