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Check out the Auntie-Ji of dementia websites

Check out the Auntie-Ji of dementia websites

Managing Editor

Swapna Kishore is on a mission to bring caregiving help and advice to the country of India, where as she says on her website, Dementia Care Notes®, “Awareness of dementia is poor, and acceptance of a caregiver’s role is poorer.”

If you’re an ex-pat worrying about loved ones in India, there is invaluable information here, set in the context of the Indian family culture. It’s a gold mine: there are regional resources from Kolkata to BangaloreWhat’s more, the site has a Hindi version, so you that you can read all of the information in Hindi, click here.

If you learn better from videos, check out the Dementia Care Notes® videos, in English and Hindi. Plus personal stories and interviews from caregivers, volunteers and experts, click here.

swapnakishore Swapna Kishore’s tips walk you through every possible behavioural scenario you may come across.

Now, I’ll let Swapna speak for herself. Here is her very good post explaining how the assistance you need to give your loved one will change with the condition’s progress.

Assistance required increases over time

The severity of dementia is the strongest predictor of hours of PADL (personal activities of daily living) support, which increased from an average of 2.3 hours for mild dementia to 7.1 hours for severe dementia. –From The Dementia India Report 2010

Patients need help with various activities because they may not remember how to do them, they may have movement disorders and poor coordination, they may have lost interest in doing things, or may not understand why something needs to be done. They may not be able to understand instructions when someone tries to help them.

As dementia is a progressive disorder, patients need more assistance as their condition worsens.

Here is one step-by-step example of how assistance may progress for one activity of daily living: bathing.

  • In the beginning, a patient may only need to be reminded to have her bath.
  • After a while, caregivers may also need to be around in case the patient has problems, and just to check that the patient is soaping and rinsing adequately and remind them if not so.
  • Later, the patient may need to be reminded of specific tasks in a bath (like soap yourself, rinse yourself) in the right sequence. The objects needed for the bath may need to be prepared for them (bucket has water of the right temperature, mug is accessible, the towel and clothes are on the towel bar, the soap dish has soap) .
  • Patients may then start needing help for some of the tasks, such as applying soap on the back, or washing the toes, or shampooing the hair. Help may be given by guiding the wrist of the patient, or holding the elbow to guide the arm. Patients often are able to do the task if we help them start it.
  • We may have to start doing some trickier tasks for the patient.
  • After some days, the caregiver may find the patient looking at the soap or towel in a puzzled way. The amount of help needs to go up another notch now. The caregiver may then need to actually apply the soap, rub the skin, rinse the soap, towel the patient, and help them wear clothes.
  • The patient may also have lost all interest in doing anything
  • When the patient gets bed-ridden, a bed-bath has to be given. By now the patient is quite passive for most of the activity.
To read the full text, which includes: how to help patients with their activities; an animated video with a character assisting her Amma; what to do when a patient doesn’t recognize or know what to do with an object; and many many more helpful tips in this topic area, click here.
For the full site, go to Dementia Care Notes® (
Selection reprinted with permission of Swapna Kishore

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Susan Grimbly

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