Welcome to Dementia Care Notes!

Dementia is a group of symptoms that can occur as a result of some diseases that damage the brain (examples of such diseases: 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–family members, friends, colleagues, etc.

interviews of dementia caregivers and volunteers from India, sharing stories, problems, wishlists
His condition affected every sphere of my life: a son talks of his fathers Alzheimers
early onset dementia interview-A case of early-onset Alzheimers Disease
dementia caregiver interview-Conflicts in the family over dementia care
dementia caregiver interview-A long distance caregiver shares her story
dementia caregiver interview-Our presence makes a difference to her
Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared
a dementia caregiver story and wishlist for awareness and caregiver support
Father thought I wanted to kill him: a daughter talks of her fathers dementia
development consultant interview-Invisibility of caregivers leads to their isolation
dementia caregiver interview-She was only pretending to forget

As dementia progresses, patients 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. Family members do not know how to help such patients. Theu do not know about caregiving skills, available resources, or support. They think the person is having typical old age problems. They expect the patient to think and behave like elders who don’t have dementia. This makes things more difficult for the patient. All this makes dementia care in India 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.

Dementia is a serious medical condition. Most families don’t know that dementia cannot be cured. No medicine 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, but these don’t help all patients. Dementia goes on for many years and the patient needs more and more help with time. Given that medicines give only limited relief, good care is very important for the patient’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 dementia patients 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 patients as unreasonable, agitated, and violent. But not all patients show agitation or other worrying behavior. Also, many factors affect behavior and worrisome behavior can be reduced by adjusting things like the patient’s environment, activities, and interactions. The Dementia Care Notes site provides information to help families understand dementia and care. 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:

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.
  • Caregiver Interviews and Voices: Read interviews of caregivers and experts. See links to blogs and sites of Indian caregivers. Check out news articles where caregivers have shared their experiences.
  • 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. Link 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, DVDs, and online videos.
  • Downloads: View or download 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.
  • 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.

if interested, you can read the background story of why this site was created.

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

Looking for information on dementia/ caregiving in Hindi? Check out our Hindi version of this site at: http://dementiahindi.com 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.

Page/ post last updated on: May 16, 2016