I'm Swapna Kishore, writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade. I use this blog to share my personal caregiving journey, my experiences helping other caregivers, musings on life, aging, dementia in India, etc. More about me & this blog and my dementia care work
Contact me to share thoughts on dementia/ care concerns, tips, & problems, or the joys and travails of being fellow fiction writers,whatever.
Contact me to share thoughts on dementia/ care concerns, tips, & problems, or the joys and travails of being fellow fiction writers,whatever.
Website for dementia caregivers
Visit Dementia Care Notes for information, resources, tips, news, caregiver stories and expert interviews. The website is especially intended for dementia caregivers in India.
Visit Dementia Hindi for the Hindi version of the above site.
Visit Dementia Hindi for the Hindi version of the above site.
Archives
Recent posts
- Dementia prevalence, life expectancy, population pyramids, and playing around with graphs and scattered numbers; also, some sundry thoughts
- Dementia is not something only “others” get: Thoughts on vascular and other types of dementia (not just Alzheimer’s)
- Disorientation, memories, adjustments, new realities: two weeks after my mother’s death
- Impermanence, Death, Closures and Continuity through Body Donation
- My lowered social immunity, unsolicited pity people have for my mother, my wanting to curl away and hide: I need a break
- Resources for dementia care volunteers now available online
- Confused, disoriented elders who wander: what can be done, and a video with tips.
- Human costs of concealing a dementia diagnosis
Seleced personal experiences
- (My mother's death): Impermanence, Death, Closures and Continuity through Body Donation
- Update on my bedridden mother
- Impermanence, Death, Closures and Continuity through Body Donation
- All in a day: what care for a bedridden mother involves
- Some days are good
- Beginning to understand the reality of “memory loss”
- Enjoying fun time with my mother
- My mother, a collage of my memories
- Ramblings on love, hate, and a life worth living
- Where is Mother, or, when a dementia patient walks out
- A sense of loss
- Reshaping career and identity
- Murderers, thieves, and an old woman amidst them
- Ignorance is not bliss
- First part of the entries describing the diagnosis
General musings on life and care
- Of Mom, and a story about dutiful worlds
- Active, visible elders, and inactive, tucked away, hidden elders
- Listening to caregivers, respecting them, supporting them: a follow-up post
- Over years of caregiving...
- Understanding, believing, denying
- A difficult story to write: A caregiver’s tale
- The caregiver learning curve
- Fun times, me-time, glasses half full, and why I no longer have dreams
- Over years of caregiving…
- When an elder in the family has dementia: the impact on children
- Of mirrors, identity, and the faces of dementia
Sharing with dementia care volunteers
Check out these pages that share resources with volunteers helping dementia caregivers. Also, see the selected blog entries:
- Resources for dementia care volunteers now available online
- Hindi website for dementia caregivers in India (40+ pages): an announcement
- My involvement in dementia care support: an explanation
- Young today, a dementia caregiver tomorrow; let us involve the stakeholders
- About doctors, hospitals, healthcare, and a dementia care support wishlist
- Understanding dementia home care in India
- Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India
- A four part entry on challenges of creating resources in Indian languages, and suggestions for a way forward: part 1
- Dementia Awareness in India: Some Recent Observations
- For Those New to Caregiving
- Echoes across caregivers, touching lives
- Down memory lane, one year of gathering caregiver perspectives, caregiver voices
- How much is too much: focusing on relevant components while spreading dementia awareness
- Where dementia caregivers in India need help
Dementia/ care resource links
Communities
- Facebook group for discussions on dementia and care: Alzheimer's Disease in India (posts visible to all FB members)
- Facebook group for patients, advocates, caregivers to share: Memory People (posts only visible to group members)
- Message boards and chat rooms of Alzheimer's Association (posts visible to public)
(Contact me for updated information on dementia care communities where posts are only visible to group members)
Search using tags
acceptance
accusations
activities
ageing
awareness
bedridden
caregiver
caregivers
caregiver stories
caregiving skills
changes over the years
community
decisions
dementia
dementia care
denial
diagnosis
doctors
dying
emergencies
end of life
fear
fun
games
Hindi
home help
hospitals
India
isolation
late stage dementia
memory loss
pacing
planning care
quality of life
resources
role
social interactions
society
special moments
stress
support groups
symptoms
trained attendant
training
understanding dementia
Watch videos at Vodpod.
From twitter @swapnawrites
- RT @dementia_dcn uploaded video on #dementia #wandering suggestions at youtube.com/watch?v=zD8PEy…: Tweeted 4 months ago
Recent updates from Dementia Care Notes
- Caregiver interview: Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts
- Hindi video discussion on the wandering problem and what families can do about it: Dementia mein bhatakne/ khone kee samasya: parivaaron ke liye sujhaav
- English video discussion on wandering : Dementia and Wandering: suggestions for family caregvers
- Caregiver interview: Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates
- Hindi video explanation: Dementia aur Alzheimer's mein kya farak hai
- English video explanation: What is the difference between dementia and Alzheimer's
- Caregiver Interview: When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law
- Caregiver Interview: Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia
- Caregiver Interview: My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver
- Caregiver Interview: Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse
- Caregiver Interview: She would simply hold on to me for support: a husband cares for a wife with dementia
 | Profile on Facebook |
 | Profile on slideshare.net |
 | Profile on LinkedIn® |
 | Youtube channel of Dementia Care Notes |
(I also have a Google Plus profile, which, alas, I don't use much)
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