Welcome to Dementia Care Notes!

When someone suffers from dementia (which could be caused by Alzheimer’s Disease, strokes, fronto-temporal dementia, or any of the almost hundred causes) all of us are affected — the patient, caregivers, family, friends, colleagues.

As dementia progresses, patients forget things more often and are also unable to handle normal activities. They become frustrated, bewildered, and agitated. In India, where dementia behaviour is often mistaken as “old age”, family caregivers and friends do not know how to help such patients. They are unaware of dementia caregiving skills, or other support and resources they can use. As a result, dementia care in India is often overwhelming for everyone concerned.

This site offers information, resources, and caregiver stories that could help dementia caregivers. It is intended for dementia caregivers in India, and caregivers outside India involved in “remote caregiving” for dementia patients here. For family, friends, colleagues, and anyone concerned about dementia care in India.

If you are a caregiver looking for tips on how to handle some basic problems like talking to patients or helping them with their daily activities, or coping with their challenging behaviour, you can begin by looking at our quicklink menu for essential caregiving tools. If you are wondering whether this site can help you, or are not sure how to use the site, see our Site FAQ page. Read on below for the sections of the site.

Sections on this site:

• About Dementia: Basic information on dementia, such as what dementia is, the diseases that cause it, how dementia progresses, the diagnosis and treatment, and what the prevalence and risk factors are. The focus of this section is knowledge about dementia that impacts caregivers, and the section includes a detailed discussion on how dementia affects behaviour. There is also information on the status of dementia and caregiving in India. Links are given to discussions on dementia risk factors and suggested prevention approaches, and to important reports on dementia status in India and the world.
• Caregiving for dementia patients: This section provides material for caregivers of dementia patients. It discusses the approach, including emotional orientation, planning, and balancing caregiving with other responsibilities. The caregiver’s role is discussed, as are various aspects of planning for the care of patients for different stages of dementia, including a section on early-onset dementia. We discuss how to adapt a home to keep patients safe and enable them as their dementia progresses and their abilities change. The Caregiver Essential Toolkit includes topics like communication with patients, helping them with daily activities, handling challenging dementia behaviour, and supporting patients in late-stage dementia. Extensive information is provided to effectively utilize paid attendants and other services. Families need to coordinate to look after elders with dementia; there is a discussion on what such coordination involves, and typical problems encountered. Other topics include: how to improve the patient quality of life, caregivers’ emotions and stress, and how family and friends can help. Long-distance caregiving is also discussed.
• Caregiver Interviews and Voices: Here, we present a variety of experiences of caregivers of dementia patients. These “caregiver voices” are presented as interviews of caregivers and experts, as links to blogs and sites of Indian caregivers, and as links to various news articles where caregivers have shared their experiences. We also invite visitors to share their experiences.
• Resources: This section contains links to resources (sites, books, DVDs, online videos) and organizations that can be helpful. There are plenty of resources available in India, and contact information is provided for dementia resources and services across India, including city-wise resources for cities such as Bangalore, Delhi, Hyderabad, Kolkata, Mumbai.  Link are also provided for informational websites.
• Downloads: The section contains links to useful pamphlets, presentations and videos prepared by Dementia Care Notes. Links allow vistors to view/ download these resources. Material is constantly being added to this section. Current presentations/ documents available include tips for new caregivers, brief adn detailed 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. Some of the material is also available in Hindi.
• Contact Us: Our contact information for you to write in with your comments, queries, feedback, or to share your own experiences. Or read our Site FAQ to know whether the site can help you, or see our site map. And do write to us; we look forward to hearing from you.

More about why this site has been created, and such stuff is here.

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 data on medical options should consult doctors and medical professionals, and also visit the authoritative medical sites already existing.