Welcome to Dementia Care Notes!

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Dementia is a group of symptoms that can occur as a result of some diseases that damage the brain. Examples of such diseases are Alzheimer’s Disease, strokes, Fronto-Temporal Dementia, Lewy Body Dementia, etc. The abilities of persons with dementia decline in many ways. This affects them and everyone around them, such as family members, friends, relatives, and colleagues.

As dementia progresses, persons with dementia may forget things more often. They may have problems finding the correct words. They may not be able to recognize or use objects around them. Normal activities become more difficult to do. Their personality may change. They may withdraw or become frustrated, bewildered, agitated, or even abusive. As dementia advances, they decline more visibly and by late-stage dementia, they become fully dependent.

Family members do not know how to help them. They do not know about caregiving skills, available resources, or support. They think the person is having typical old age problems. They expect the person with dementia to think and behave like elders who don’t have dementia. This makes things more difficult for the person with dementia. Unfortunately, the understanding of dementia and the support systems for dementia care are poor in India. All this makes dementia care very overwhelming for everyone in the family. This DEMENTIA CARE NOTES® site offers information, resources, and caregiver stories that could help dementia caregivers. It is intended for family caregivers of persons with dementia, friends, colleagues, and anyone concerned about dementia care in India.

Interviews sharing experiences and tips.
Family caregiver interviews. Personal care experiences. Challenges faced – like accusations, social isolation, sibling conflicts, untrained attendants, handling long-distance care, etc.
Professionals and volunteer interviews Doctors on how to prepare for/ get a diagnosis, and manage late-stage care at home. Explanations of how facilities handle care, support active ageing.

Dementia is a serious medical condition that cannot be cured. No medicine approved for use in India can slow down the diseases causing a patient’s dementia. That is, no medicine can slow the rate of brain damage. Some medicines give some relief from symptoms for some forms of dementia, and can even make a significant difference for some time to their quality of life, and are definitely worth considering. But medicines don’t help everyone with dementia. Dementia goes on for many years and the help needed by the person increases with time. Given that medicines give only limited relief, good care is very important for the person’s well-being. If families understand dementia, they can find better ways to plan and provide care. Everyone will be less stressed.

Many caregivers are confused by conflicting explanations of dementia. One such aspect is how dementia affects persons. Some reports show persons with dementia as passive persons, unable to do anything; phrases used include “not quite there” or “absent”. This is misleading. Persons with dementia can lead active and fulfilling lives if given suitable support. Some other reports show them as unreasonable, agitated, and violent. But not all persons with dementia show agitation or other worrying behavior. Also, many factors affect behavior and worrisome behavior can be reduced by adjusting things like the environment, activities, and interactions. The Dementia Care Notes site provides information to help families understand dementia and care, and is especially intended for those in India. We also include relevant links and resources. We hope this will make the dementia care journey smoother and more effective for everyone.

Sections on this site.

The COVID pandemic highlighted the vulnerability of elders to infections and complications and the need to protect them. Important aspects are improving immunity, getting vaccinated, and exercising precautions for the patients and caregivers. Long-COVID and the increased risk of dementia after COVID have also been a wake-up call. Even though most people have found some sort of “new normal” around COVID, lessons from the pandemic need to be incorporated in care approaches and some information has therefore been added to individual pages on this site, wherever relevant. Additionally, a page specifically on COVID which was created in 2020 and is updated regularly as the situation evolves can be seen at Dementia Home Care during COVID – Infection Risk, Vaccination, Care Approach and a related infographic is Dementia Care During COVID-19: Infographics With Tips.

Note. Are you looking for quick solutions for your caregiving problems? Start with our quicklink menu for essential caregiving tools. Read on below for the sections on the site.

  • About Dementia. Basic information on dementia that caregivers need to know. Includes pages on symptoms, diseases that cause it, how it progresses, diagnosis and treatment, and prevalence and risk factors. Of particular importance for caregivers is the detailed discussion on how dementia affects behavior. Some advanced pages with references are also available, including links to important studies and reports from India and the world.
  • Caring for dementia patients. This section provides material to help family members take care of dementia patients. It discusses various aspects of the care approach. Use this to get ready for the caregiver role. The section discusses planning for different stages of dementia. There is a special section for early-onset (younger onset) dementia. Read suggestions on how to adapt a home for patients. The Caregiver Essential Toolkit puts together the skills all caregivers need. Learn how to talk to patients, help them with tasks, cope with changed behavior, and support care in late stage dementia. The section includes a detailed discussion on effectively using paid attendants and other services, especially suited for India. Read suggestions regarding the common problems families face when coordinating care. Learn how to improve the patient’s quality of life and reduce your stress. Read tips on how to get help from family and friends. Get suggestions on handling care when in a different city or country.
  • Voices and Interviews. Read interviews of caregivers and experts. Shares personal care experiences and challenges. Tips from doctors and volunteers for handling diagnosis and care. See links to blogs and sites of Indian caregivers. Check out news articles where caregivers have shared their experiences.
  • Videos and presentations. View notes, presentations, and videos prepared by Dementia Care Notes. Topics include tips for new caregivers, introduction to dementia, explanation of the relationship between dementia and Alzheimer’s, how to help patients with daily activities, and simplified training material suitable for translation/ training hired help. Many presentations are also available in Hindi.
  • More Resources. Get links to organizations useful for dementia care in India. Contact information is provided for dementia resources and services across India. This includes resources for cities such as Bangalore, Delhi, Hyderabad, Kolkata, Mumbai. Links are provided for informational websites. Links are also provided for material in various Indian languages, like Hindi, Bengali, Urdu, Telugu, Tamil, Malayalam, etc. Get data on useful books and online videos.
  • Contact Us. See our contact information in case you want to send in comments, queries, or feedback. Or check our Site FAQ and Site Map to know whether the site can help you.

Not sure whether the site can help you? Wondering how to use the material available on the site? Visit our Site FAQ page.

Looking for information on dementia/ caregiving in Hindi? Check out our Hindi version of this site at Dementia Hindi Opens in new window or contact us if you want to discuss your concerns with someone who can speak Hindi.

Note. This is not a medical site. Visitors who want medical advice should consult doctors and medical professionals. They can also visit authoritative medical sites.

Dementia Care Notes