Swapna Kishore

Hindi website for dementia caregivers

admin — Sat, 10 Mar 2012 11:10:35 +0000

The Hindi version of Dementia Care Notes is now available as a 40+ page website at Dementia Hindi.

The website is written in conversational Hindi, and includes sections on dementia, on what caregivers need to plan for, essential caregiving skills like communication, helping patients, handling difficulty behaviour, etc., dementia/ care organizations and resources, useful downloads, links to videos in Hindi, and links to caregiver interviews. The material has been prepared keeping the social/ cultural setting of India in mind. Please have a look, and if you find it useful, please share this link with anyone who may benefit.

Thank you.

Videos for dementia and wandering in English and Hindi

admin — Sat, 10 Mar 2012 11:03:45 +0000

Wandering is a very common problem amongst people with dementia, and Alzheimer’s Association USA estimates that more than 60% of the persons with dementia will wander. The Dementia Care Notes website has been updated to include videos that discuss the wandering problem in persons with dementia. The videos are available in English and Hindi and include several suggestions on what families can do to reduce the chance of wandering, and to locate persons faster in case they do wander. The page with links to the videos and downloads for their transcripts is here:

Dementia and Wandering: Suggestions for family caregivers

Dementia caregiver interviews added: November 2011 to February 2012

admin — Sat, 10 Mar 2012 10:56:02 +0000

A number of new dementia caregiver interviews were added to the Dementia Care Notes website during the period: November 2011 to February 2012. These are listed below:

A daughter, solo caregiver of a father with dementia, struggles to handle caregiving, financial problems, isolation, problems in her marriage, and an unsupportive brother

Hyderabad-based Ritika is a 48-year old solo caregiver for her 80-year old father; her brother and sister-in-law live in Jammu and her husband is in the armed forces and in another city. Ritika entered the solo caregiver situation without realizing it, through a series of steps forced by misunderstandings caused by her father’s behaviour and her brother’s response to them, and she has been handling the caregiving alone for three years while also having to earn money and cope with the emotional and physical isolation. Her marriage may not survive her prolonged absence from her husband’s home. Through these last three years, Ritika has faced extreme financial hardship and emotional setbacks, but now she is finding her balance and trying to make the best of her situation. In this detailed interview she shares the sequence of events, how every relationship has been tested in the last three high-stress years, how she copes, what she thinks of her future and how she manages to carry on in spite of such an extreme caregiving situation. Read the interview here: Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts.

A daughter’s detailed description of care for her fully dependent father, including home care, hospitals, dilemmas, challenges

Vijaya is a Mumbai-based qualified accountant, who set aside her career for some years to care for her father, a dementia patient. In this interview, Vijaya describes the final months of her father’s life, and how she and her sister cared for their father as his dependence increased. Interview includes descriptions of hospital visits, dilemmas and decisions, challenges of handling nurses, work involved in home care, and tender moments shared with the father in spite of his inability to speak. Read the interview here: Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates.

A daughter-in-law describes the challenges and heartbreak of care for a bedridden mother-in-law

Neena, a chartered accountant who left her professional work to look after her mother-in-law, describes the challenges and heartbreak of home care of a bedridden patient with multiple medical problems. She describes how Ma became bedridden, how they had to set up their home for the complex nursing care required, the challenges they face, Ma’s pain and unhealed wounds, the occasional incidents when Ma communicates and connects with them, the difficulty of seeing Ma struggle. Read the interview here: When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law

The full list of interviews is here: Voices: Interviews with dementia caregivers, volunteers, and experts

New dementia caregiver and volunteer interviews added to site

admin — Tue, 25 Oct 2011 07:45:49 +0000

A number of new interviews were added to the site in September and October 2011. These are listed below:

Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia

Mala (name changed) has a mother suffering from Alzheimer’s Disease, something the family found out only after years of watching her slowly-increasing forgetfulness. Care is being given by Mala’s father, who refuses help. In this interview, Mala goes down memory lane to describe the early symptoms, the diagnosis and treatment, the family’s coordination for the care, and Mala’s own hope and guilt. Read the interview here: Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia

My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

Nadira, a highly-reputed consultant, is taking a break from her professional work and residing in India to care for her 80+ mother who suffers from Alzheimer’s. She shares how the progression of her mother’s illness reflected in behaviour changes, how the family took time registering that these changes were different compared to earlier, more regular difficult behaviour displayed by her mother, and how Nadira has now educated herself on the condition and developed the patience, love, and empathy required to care for her mother. Read the interview here: My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

She would simply hold on to me for support: a husband cares for a wife with dementia

Ramana Rajgopaul, a successful professional manager, gave up his lucrative career to become the caregiver for his wife after multiple cerebral and cardiac infarcts. His wife has since passed away. In this interview, he describes his experiences and emotions as his wife’s caregiver, how caregiving made him a different person, how he did whatever he could to keep his wife healthy and happy, how he shared tender moments with her, and how he misses her. Read the interview here: She would simply hold on to me for support: a husband cares for a wife with dementia

A dementia caregiver shares her story and her caregiver wishlist, describing what she thinks volunteers and NGOs can do to improve awareness and caregiver support

Kalpana Malani, a Mumbai resident in her mid-fifties, is a caregiver for a mother with dementia. She balances this responsibility along with her other family responsibilities and managing her own retail business. In this interview, Kalpana describes her caregiving situation and problems, and shares her wishlist as a caregiver. Read the interview here: A dementia caregiver shares her story and her caregiver wishlist

A caregiver who lives in the USA but frequently visits India to help in caregiving, describes how she and her siblings coordinate caregiving

Sudha has a father with dementia. Though Sudha has settled in the USA with her husband, she spends several months a year living in Noida to help her mother care for her father. In this interview, Sudha describes how she and her siblings coordinate long-distance care using frequent phone calls and visits, and also using technology to streamline the care. She describes the differing approaches of her and her siblings, and shares her thoughts on sibling mismatches. Read the interview here: Long distance caregiving: a caregiver describes the challenges and her approach

Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

Sheila is a registered nurse who has worked in Aged Care assisted living facilities (long-term stay homes for elders). She is currently working in an acute hospital where caring for patients with dementia is an everyday occurrence. She has interacted extensively with several dementia patients as part of her professional work. In this interview, she uses her professional experiences to shares tips that can be used by family caregivers looking after persons with dementia in a home setting, including activities to keep patients occupied, changes that can help reduce their agitation and disorientation, and simple techniques like making things like rummage boxes and fiddle mats, which can engross patients. Read the interview here: Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

Malayalam dementia care guide available

admin — Sat, 27 Aug 2011 03:37:57 +0000

Courtesy Dr Shaji, the Dementia Care Notes site now provides as a download, a PDF file that gives dementia care guidelines in Malayalam. Dr Shaji cautions that this document is only a general guideline and does not substitute professional advice which should be obtained from the doctor who examines the patient with dementia — a caution that applies to any material available on the site. The Malayalam guide has been listed on the relevant pages:

For downloading the document directly, click here to download

Added material for attendants and dementia home care

admin — Wed, 20 Jul 2011 04:23:00 +0000

The Dementia Care Notes website has been updated to include a discussion on what to expect from attendants in dementia home care, how to adjust to them, how to orient them, and supervise them, and ensure safety and security, etc. The page is here:

Using Trained Attendants for Dementia Home Care

The page also links to a document that can be used as a starting point while orienting an attendant for your patient’s needs. The document is downloadable at this link: Orienting attendants for dementia home care.

Added some city-wise dementia resource pages to Dementia Care Notes

admin — Tue, 28 Jun 2011 13:36:16 +0000

I’ve been collecting data and creating city-wise dementia care resource pages for various cities in India: Chennai and Coimbatore, Goa, Kerala cities (Kunnamkulam, Calicut,Cochin, Kottayyam, Pathanamthitta, Trivandrum, Kottapady), and Pune. Also updated the list of cities on the city-wise dementia resource pages.

This completes my data collection for dementia resources across India. The data is up to date as of today, which took several phone calls and all that, but things keep changing so I guess a validation round every year will be needed, if not earlier.

Personal story of dementia caregiver in Delhi

admin — Tue, 19 Apr 2011 07:44:00 +0000

I’ve uploaded an interview of Supriya Dutt, a caregiver in Delhi NCR whose mother-in-law suffers from multiple medical problems, including dementia, which makes caregiving a challenge. Supriya has quit her job to manage this care. Click here to read the challenges of dementia care when a patient suffers from multiple medical conditions.

There are more personal caregiver stories related to dementia care in India, too: do send in your comments and suggestions to me, thanks.

Swapna Kishore

Hindi website for dementia caregivers

Videos for dementia and wandering in English and Hindi

Dementia caregiver interviews added: November 2011 to February 2012

A number of new dementia caregiver interviews were added to the Dementia Care Notes website during the period: November 2011 to February 2012. These are listed below:

A daughter, solo caregiver of a father with dementia, struggles to handle caregiving, financial problems, isolation, problems in her marriage, and an unsupportive brother

A daughter’s detailed description of care for her fully dependent father, including home care, hospitals, dilemmas, challenges

A daughter-in-law describes the challenges and heartbreak of care for a bedridden mother-in-law

New dementia caregiver and volunteer interviews added to site

A number of new interviews were added to the site in September and October 2011. These are listed below:

Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia

My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

She would simply hold on to me for support: a husband cares for a wife with dementia

A dementia caregiver shares her story and her caregiver wishlist, describing what she thinks volunteers and NGOs can do to improve awareness and caregiver support

A caregiver who lives in the USA but frequently visits India to help in caregiving, describes how she and her siblings coordinate caregiving

Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

Malayalam dementia care guide available

Added material for attendants and dementia home care

Added some city-wise dementia resource pages to Dementia Care Notes

Personal story of dementia caregiver in Delhi