Site update notes

This page describes the updates done to this site. It may be useful to check if you have visited the site earlier and want to know whether any significant changes have happened. However, note that the best way to benefit from the content is to just see the page(s) again and check the menus on top or see the site map.

Site updates include both ongoing updates, and special/ significant content updates.

Ongoing site maintenance and content updates

Ongoing updates are done regularly and may affect several pages. Such ongoing updates are done every few months, and sometimes smaller batches are done in between if some significant data is received. The types of changes done as part of ongoing maintenance include:

  • References and links are added/ removed as relevant for the page, including cross-links to other pages on the site. An attempt is made to include whatever could be useful, and remove obsolete material or material that is less useful now. Broken links are also periodically removed.
  • Pages are reviewed on an ongoing basis for readability and ease of use, and based on this review and any feedback received, the content may be rearranged or edited. Checks are periodically made to ensure the site remains mobile-friendly and easy to access and understand.
  • Dementia-specific books, videos, caregiver interviews from Indian newspapers and blogs, and other such material is regularly added or removed depending on usefulness and feedback received. Similar regular updates are done for various city-wise resources, all-India resources, and online resources. Sections may be added or re-arranged on resource pages and cities may be added, as and when data seems relevant. Special attention is given to include/ update material on dementia that may be available in Indian languages. (Note: While all attempts have been made to ensure that the included resources are useful, the listings are only for the convenience of site visitors, and they must check the reliability and suitability of these themselves.)
  • Terminology in dementia keeps changing/ evolving. The site is periodically reviewed to see what to change to ensure it remains understandable.
  • The Site FAQ page is also periodically updated to include common site-related queries and their answers.

Additionally, the bottom of most pages includes text that gives the date of the last update (this may have been a major update, or a minor correction)

Special content update batches

In addition to the above maintenance, some specific content enhancement projects are undertaken periodically for changes that may result in the creation of new pages or significant coverage of some aspect that spans multiple pages. The log below is restricted to the more important content change batches.

As noted earlier, the best way to benefit from the content is to just see the page again.

If you have last visited the site before April 2014, please read the pages again because extensive and significant changes have been made to most of the pages, and many pages, references, resources, and links have been added.

April 2017 to July 2017

A major addition was made in the coverage and discussion around late stage dementia home care, in the form of a six-part interview with De. Soumya Hedge, a Bangalore-based Geriatric Psychiatrist with extensive experience supporting dementia care in India. These are available at: Home care for late stage dementia, Part 1: Prepare for home care , Home care for late stage dementia, Part 2: Getting medical advice and preparing for decline, Home care for late stage dementia, Part 3: Bruising, skin care, exercise, massage, bedsores, Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life, Home care for late stage dementia, Part 5: Eating/ swallowing problems, and Home care for late stage dementia, Part 6: Tube feeding and related decisions.

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May 2016 to March 2017

A new set of pages was created for dementia resources in various Indian languages, under the heading: Dementia Resources in Indian Languages. There are currently twelve pages in this section, giving dementia resources in Assamese, Bengali, Gujarati, Hindi, Kannada, Konkani, Malayalam, Marathi, Punjabi, Tamil, Telugu, and Urdu. Each page contains information on all available dementia resources in that language, such as websites/ web pages, downloadable documents, Youtube videos, presentations available online, caregiver manuals, helplines, etc. Many pages also include manuals that can be read directly on the page. These resources have been gathered from across experts and organizations working in dementia from India, neighboring countries, and other countries who have prepared such resources for residents and immigrants.

A new page was also added for Indian movies depicting dementia (in any Indian language, including Hindi, Malayalam, Kannada, Marathi, etc.). Review comments have been added for each movie, related to what aspects of dementia and care the movie deicts, and how useful or misleading/ incomplete the depiction may be for someone who wants to understand dementia better by seeing the movie. The page is part of the resources section: Indian movies depicting dementia.

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Dec 2015 to April 2016

Significant changes were made to various resource pages, especially for material in Indian languages, online support groups, and city data. Also, the books and DVD pages were significantly changed. Of special note here is the addition of books on dementia and care from India, including books written by Indian caregivers and also books on dementia and care written in Indian languages. A new page was also added for caregiver books from India as part of Indian voices on dementia. See the updated page on books here: Books on dementia and care and the new page here: Voices: Books by Indian caregivers.

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May 2015 to Nov 2015

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May 2014 to April 2015

  • Caregivers planning for self-care: Dementia caregiving is considered the most stressful form of caregiving, and many professionals advise caregivers to care for themselves, but overwhelmed caregivers are often unable to do self-care activities or build support networks. Several pages on the site were enhanced to include discussions on practical approaches for self-care, with emphasis on the need to plan before the situation becomes overwhelming. Planning for self-care is as necessary as planning for the care of the person with dementia. Pages now discussing this aspect include: Dementia Home Care: An Overview, Understand the caregiver’s role, Adapt the home for dementia patients, Plan care for various stages of dementia, and Caregiver emotions and stress.
  • Understanding changed behavior and coping: Most persons with dementia will show changes in behavior. Family mmebers, however, do not often realize that some of these changes occur because of the difficulties and confusions created by dementia; understanding this may change the way they analyze and cope with the change. Most articles on changed behavior focus on aggression, repetition, sundowning, wandering, etc., but do not mention smaller changes like hoarding, shadowing, etc.. Various behavior-related pages on the website have been enhanced to include a larger range of changed behaviors. Also, discussion and links relevant many changed behaviors have been enhanced. These include: How dementia impacts behaviour, Handling Behaviour Challenges, and Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning.
  • Home adaptations page was restructured and enhanced significantly. Suitable home adaptations are very important to create an environment that is empowering and encourages persons with dementia to remain as independent as possible, and also keeps them safe. Alertness and suitable changes at home can encourage some desirable behaviors (for better safety and health) and discourage others (more harmful) behaviors. The page Adapt the home for dementia patients has been enhanced to include many suggestions for this.
  • Some behaviors become challenging because the person cannot handle them safely now although they were a normal part of the person’s behavior earlier. Examples are smoking, driving, handling financial transactions, etc. Coping with these may require more alertness and planning. It may also include using suitable steps in adapting the home. Changes done to the site for this subtopic include changes to pages: Adapt the home for dementia patients and Plan care for various stages of dementia.
  • The aspect of keeping the person with dementia healthy is now explicitly addressed through specific pointers and links, such as on the Helping with Activities of Daily Living and Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning pages.
  • Understanding risk-related research, and making personal choices: Given the number of confusing, and sometimes deliberately misleading articles on various risk related research and implications of such studies, many persons who want to reduce their probability of dementia don’t know how to proceed. Our page discussing Dementia risk factors related research, has been rewritten based on multiple queries received. It gives a foundation to interpret research after seeing what sort of factors cause confusion to persons consuming popular media articles on dementia. It also includes several specific topics that are often discussed when talking of risk factors and protective factors related to dementia, including the role of tobacco, cognitive training, life style changes, specific herbs and spices, etc. Diagnosis, under-diagnosis, and misdiagnosis have also been discussed in more detail.

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April 2014:

  • Based on questions caregivers often ask, major changes were made to multiple pages to address areas where misinformation and confusion is common and may result in false expectations on aspects such as dementia progression and cure. Aspects addressed across pages include the genetics of dementia, so-called miracle cures and some commonly discussed herbs and treatments (such as stem cell research), more detailed discussion of medical problems that may create dementia-like symptoms but are caused by reversible diseases, etc. Explanations of the diagnosis have also been enhanced based on the common confusions.
  • Families often do not realize that dementia is a life-limiting condition that shortens the lives of persons with dementia. Discussions on various pages have been enhanced to include this, especially Stages of dementia and Late-stage dementia care.
  • Medication is of very limited help in dementia. This makes the role of the caregiver critical for the well-being of the person with dementia, and also for the overall care environment in the family. This aspect has now been explicitly mentioned on relevant pages .
  • Caregivers who understand the impact of dementia can handle the situation better. Multiple pages have been enhanced to discuss types and reasons for changed behaviors and what families can do, and how to have realistic expectations. Caregiving pages have been enhanced to include ideas on how to be more effective, and also on using tools like introducing meaningful activities, or using music as a means to calm persons with dementia or help them reminiscence, etc.
  • A detailed discussion has been added to the section on evaluation of short and long term respite care centres, on the page, Using various dementia/ home care services.

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(Note that the content on the Dementia Care Notes website does not constitute medical advice)

Page/ post last updated on: October 1, 2018

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