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Dementia Home Care in India: Overview and Challenges ARDSICON 2015

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Dementia Home Care in India: Overview and Challenges--- A presentation made at ARDSICON 2015, the 19th National Conference of ARDSI (Alzheimer's and Related Disorders Society of India), held at Mumbai, India.

If you are concerned about dementia home care, also see the pages at: http://dementiacarenotes.in/caregivers

Published in: Education
  • Excellent presentation !! Kudos madam for your effort , I have faced this 3.6 years and this slide deck contains what a caregiver gone through .
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Dementia Home Care in India: Overview and Challenges ARDSICON 2015

  1. 1. Dementia Home Care in India: Overview and Challenges by Swapna Kishore (cyber.swapnakishore@gmail.com) http://dementiacarenotes.in Presentation for the 19th National Conference of ARDSI (Alzheimer’s and Related Disorders Society of India) December 4 and 5, 2015 at Mumbai, India ...because most dementia care happens at home
  2. 2. Topics © 2015, Swapna Kishore 2 Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints
  3. 3. About this presentation • This presentation will be made available online at http://www.slideshare.net/swapna.kishore • Contact me at cyber.swapnakishore@gmail.com • The presentation is intended for home caregivers as well as volunteers supporting dementia care in India. © 2015, Swapna Kishore 3 ✉
  4. 4. Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints OVERVIEW OF DEMENTIA & CARE © 2015, Swapna Kishore 4 Overview of dementia & care
  5. 5. What is dementia? Dementia is a syndrome, usually of a chronic or progressive nature, caused by a variety of brain illnesses that affect memory, thinking, behaviour and ability to perform everyday activities (WHO report: Dementia: A Public Health Priority; emphasis added) Syndrome: group of symptoms that characterize a condition (But not everyone may show all symptoms or the same intensity) Affect memory, thinking, behaviour, etc. : Not just mild forgetfulness seen in old age. Affects everyday life. Brain illnesses: Symptoms happen because of illnesses that affect the brain. Alzheimer’s Disease is one of them, but there are many others. Cause is “illness” not poor will-power Chronic: Continues for a long time. Progressive: Symptoms keep getting worse. © 2015, Swapna Kishore 5
  6. 6. Brain illnesses cause dementia Alzheimer’s disease is the most common form of dementia and possibly contributes to 60–70% of cases. Other major contributors include vascular dementia, dementia with Lewy bodies, and a group of diseases that contribute to frontotemporal dementia. (WHO report: Dementia: A Public Health Priority) © 2015, Swapna Kishore 6 Brain images courtesy: ADEAR (Alzheimer’s Disease Education and Referral Center)
  7. 7. Brain illnesses cause dementia Alzheimer’s disease is the most common form of dementia and possibly contributes to 60–70% of cases. Other major contributors include vascular dementia, dementia with Lewy bodies, and a group of diseases that contribute to frontotemporal dementia. (WHO report: Dementia: A Public Health Priority) Chronic and progressive ...currently no cure for Alzheimer's disease or for most other causes of dementia. Nor can a cure be expected in the near future. Researchers ....still do not know how to prevent the disease from occurring, how to stop its progression, or how to reverse its effects. (http://www.alz.co.uk/info/faq#cure, Nov 2015, emphasis added) 💊🚫 © 2015, Swapna Kishore 7 Brain images courtesy: ADEAR (Alzheimer’s Disease Education and Referral Center)   Cannot be reversed Cannot be stopped
  8. 8. Dementia symptoms & stages • Many possible symptoms. – Different persons show different symptoms – Type and intensity of symptoms depend on the underlying illness – Symptoms and their intensity get worse when the illness progresses © 2015, Swapna Kishore 8
  9. 9. Dementia symptoms & stages • Many possible symptoms. – Different persons show different symptoms – Type and intensity of symptoms depend on the underlying illness – Symptoms and their intensity get worse when the illness progresses • Broad stages – Early stage: Symptoms seem similar to old age. Possible symptoms: forgetfulness, disorientation, difficulty finding the right words, problems making decisions or doing difficult tasks, mood and behavior changes  Get worse as underlying brain illness gets worse © 2015, Swapna Kishore 9
  10. 10. Dementia symptoms & stages • Many possible symptoms. – Different persons show different symptoms – Type and intensity of symptoms depend on the underlying illness – Symptoms and their intensity get worse when the illness progresses • Broad stages – Early stage: Symptoms seem similar to old age. Possible symptoms: forgetfulness, disorientation, difficulty finding the right words, problems making decisions or doing difficult tasks, mood and behavior changes – Middle stage: Symptoms are more obvious. Examples: More forgetful. More need for help in various tasks. More visible behavior changes. May not recognize familiar persons and objects. Increasing dependence. Communication is difficult.  Get worse as underlying brain illness gets worse © 2015, Swapna Kishore 10
  11. 11. Dementia symptoms & stages • Many possible symptoms. – Different persons show different symptoms – Type and intensity of symptoms depend on the underlying illness – Symptoms and their intensity get worse when the illness progresses • Broad stages – Early stage: Symptoms seem similar to old age. Possible symptoms: forgetfulness, disorientation, difficulty finding the right words, problems making decisions or doing difficult tasks, mood and behavior changes – Middle stage: Symptoms are more obvious. Examples: More forgetful. More need for help in various tasks. More visible behavior changes. May not recognize familiar persons and objects. Increasing dependence. Communication is difficult. – Later stage: Person is almost fully dependent for everything. Examples : Incontinence. Mobility problems. Communication very poor. Even unable to tell when not well. Eating and swallowing problems. Other medical problems increase. Get worse as underlying brain illness gets worse © 2015, Swapna Kishore 11
  12. 12. When someone has dementia... The brain illness continues to damage the brain. Medications cannot stop or reverse this damage © 2015, Swapna Kishore 12 Chronic and progressive .....
  13. 13. When someone has dementia... The brain illness continues to damage the brain. Medications cannot stop or reverse this damage If diagnosis is obtained (this happens in only 10% of the cases), some drug or non-drug treatment is possible. Early diagnosis gives more “benefits of diagnosis.” © 2015, Swapna Kishore 13 Chronic and progressive .....
  14. 14. When someone has dementia... The brain illness continues to damage the brain. Medications cannot stop or reverse this damage Most families live through this without knowing about dementia. Caregivers may be young or old, mostly female but could be male. They usually live with the person, but could also be living at a distance. Sometimes caregiving is shared by taking turns. If diagnosis is obtained (this happens in only 10% of the cases), some drug or non-drug treatment is possible. Early diagnosis gives more “benefits of diagnosis.”  Person gets worse as the brain illness gets worse  © 2015, Swapna Kishore 14 Chronic and progressive .....
  15. 15. When does “care” start?  Somewhere along the dementia journey, the family members become caregivers whether they know it or not  When do families realize the problem is serious? When do they start switching from “living together” to “taking care”? When do they start.... • Seeking diagnosis? • Planning for years of care? • Actively looking for information, solutions, and help? © 2015, Swapna Kishore 15
  16. 16. Before the diagnosis • No diagnosis, wrong diagnosis, late diagnosis – No understanding or advice about dementia – Stigma for person or family common. Social isolation. – No drug or non-drug treatments – Family continues usual interactions and expectations continue. This makes the situation worse • Most persons don’t get a diagnosis • Those who get diagnosed often get the diagnosis late © 2015, Swapna Kishore 16
  17. 17. Before the diagnosis • No diagnosis, wrong diagnosis, late diagnosis – No understanding or advice about dementia – Stigma for person or family common. Social isolation. – No drug or non-drug treatments – Family continues usual interactions and expectations continue. This makes the situation worse • Most persons don’t get a diagnosis • Those who get diagnosed often get the diagnosis late All through this, the family may never know about dementia...  © 2015, Swapna Kishore 17 Symptoms assumed to be old age or laziness/ stubbornness Doctor does not diagnose dementia Doctor diagnoses dementia Family starts adjusting Family may consult doctor (if feasible and if the person agrees) Something odd happens. Family hides person/ignores symptoms
  18. 18. Just after the diagnosis • No instant change • Diagnosis is not believed – Families may not understand or believe the diagnosis – Others may not believe it • Family expects medicines will cure the disease • Family has no idea how dementia will impact them – No advice for care or future planning If they say she has an illness, they should give medicines. If Allopathy has nothing, find something in some other system. I’m sure your mother will become perfectly alright again. She is a nice lady. You should have hope. Be nice to her. Forget the diagnosis. Doctors always use big words. There is nothing wrong with your mother. She’s just a bit more forgetful, so what? © 2015, Swapna Kishore 18
  19. 19. Just after the diagnosis • No instant change • Diagnosis is not believed – Families may not understand or believe the diagnosis – Others may not believe it • Family expects medicines will cure the disease • Family has no idea how dementia will impact them – No advice for care or future planning If they say she has an illness, they should give medicines. If Allopathy has nothing, find something in some other system. I’m sure your mother will become perfectly alright again. She is a nice lady. You should have hope. Be nice to her. Forget the diagnosis. Doctors always use big words. There is nothing wrong with your mother. She’s just a bit more forgetful, so what? © 2015, Swapna Kishore 19 It takes time for families to start learning about dementia and changing for it
  20. 20. Caregiving: a gradual learning process • Ongoing learning and adjustment • In spite of all that is done, the person declines – (because dementia is chronic, and progressive) • This goes on for years. It requires big adjustments – It is tiring physically and emotionally – Takes up a lot of family attention and resources Family members try to understand how dementia affects the person. They try to see what sort of care is needed. They adjust their lives adjustments to take out time and money for care. They start using various methods to support the person Things improve for some time Then person’s dementia gets worse. Now the cycle has to start again Some care methods do not work. They need to be refined.  © 2015, Swapna Kishore 20
  21. 21. Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints DEMENTIA PREVALENCE. SUPPORT AVAILABLE. © 2015, Swapna Kishore 21 Dementia prevalence. Support available.
  22. 22. How many around us have dementia? • Anyone can get dementia • Older persons have a higher chance of dementia – Dementia prevalence doubles for every 6.6 years increase in age – In the 90+ age group, 44.1% have dementia • Persons below 60 years of age can also have dementia – Data on this very poor (heavily underdiagnosed) – Current estimates: this adds 2-8% to the number of persons with dementia 60-64 70-74 80-84 90+ Age (years) 65-69 75-79 85-89 1.9% 3.0% 4.9% 8.3% 14.0% 23.0% 44.1% © 2015, Swapna Kishore 22 Data in this section is based on published reports and national/ international resources: Dementia India Report 2010, World Alzheimer Report 2015, WHO report: Dementia, a Public Health Priority, ARDSI website and National Dementia Helpline, UN Population Reports, etc.
  23. 23. How many around us have dementia? • India, 2015: 41 lakhs elders (persons above 60) have dementia – that is 4.1 million persons or 3.7% pf persons above 60 🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠 3.7 % of people above 60 have dementia 1in every 16 households with an elder has someone with dementia 2015 • Households with anyone above 60 years old © 2015, Swapna Kishore 23
  24. 24. How many around us have dementia? • India, 2015: 41 lakhs elders (persons above 60) have dementia – that is 4.1 million persons or 3.7% pf persons above 60 🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠 3.7 % of people above 60 have dementia 1in every 16 households with an elder has someone with dementia 2015 ... because dementia is not diagnosed in most cases IndiaIn 1 10Only out of people with dementia get any diagnosis, treatment or care • Households with anyone above 60 years old • But we don’t realize this ... © 2015, Swapna Kishore 24
  25. 25. Current help from health professionals is very limited • Most health professionals do not understand or recognize dementia.... – emergency care doctors, specialists in other areas, physicians, dentists, etc. ... awareness regarding the disease is very poor in the community as well as the medical fraternity. (from Dementia India Report 2010)  © 2015, Swapna Kishore 25
  26. 26. Current help from health professionals is very limited • Most health professionals do not understand or recognize dementia.... – emergency care doctors, specialists in other areas, physicians, dentists, etc. • Extremely few specialists – The Dementia India Report calls this “very low human resource capacity” the “most significant barrier” in supporting dementia • Even families that consult doctors may not get a diagnosis or suitable advice ... awareness regarding the disease is very poor in the community as well as the medical fraternity. (from Dementia India Report 2010)  Number of specialists per 10,00,000 population Psychiatrists Neurosurgeons Psychiatric nurses Neurologists Psychologists Social workers 1 2 Note that dementia is just one of the many medical problems that these specialists support © 2015, Swapna Kishore 26
  27. 27. Current care support is very, very low • Almost all care is done at home – No place where person can spend the day while family members do their jobs or other work • Attendants very few, and expensive and unreliable – Most families in India earn less than the monthly salary of a semi- trained attendant. 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 41 lakh elders have dementia Less than 2000 Care centre capacity is: In India © 2015, Swapna Kishore 27
  28. 28. Current care support is very, very low • Almost all care is done at home – No place where person can spend the day while family members do their jobs or other work • Attendants very few, and expensive and unreliable – Most families in India earn less than the monthly salary of a semi- trained attendant • Extremely few dementia related services. Nothing affordable by most Indians. 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠 🏠🏠 🏠 🏠 🏠 🏠 41 lakh elders have dementia Less than 2000 Care centre capacity is: In India © 2015, Swapna Kishore 28 No financial help for families supporting someone with dementia  ₹
  29. 29. Multiple Constraints • Language and literacy barrier – Most information requires reading English – Material available requires reading skills beyond primary school level Even when in other languages, the material is complex. (excerpt from a Govt. website, Oct 2015) ...इनमें मस्तिष्कीय कोशिकाओं का क्षय, मस्तिष्क से प्रेरणा का कम पारेषण िथा मस्तिष्कीय कोशिकाओं के मेटाबोशिज्म के अंतिम उत्पादों का स्तथति पररवितन िाशमि है। © 2015, Swapna Kishore 29
  30. 30. Multiple Constraints • Language and literacy barrier – Most information requires reading English – Material available requires reading skills beyond primary school level • Geographical barrier – Information available only in major metros and large cities – Not available in smaller cities – Not available in rural areas (70% of India) – Some regions have very low coverage Even when in other languages, the material is complex. (excerpt from a Govt. website, Oct 2015) ...इनमें मस्तिष्कीय कोशिकाओं का क्षय, मस्तिष्क से प्रेरणा का कम पारेषण िथा मस्तिष्कीय कोशिकाओं के मेटाबोशिज्म के अंतिम उत्पादों का स्तथति पररवितन िाशमि है। Very few dementia-specific organizations; an example of ARDSI chapters (taken Oct 2015) © 2015, Swapna Kishore 30
  31. 31. Multiple Constraints • Language and literacy barrier – Most information requires reading English – Material available requires reading skills beyond primary school level • Geographical barrier – Information available only in major metros and large cities – Not available in smaller cities – Not available in rural areas (70% of India) – Some regions have very low coverage • Support not affordable. Everything costs money – Consulting doctors, doing tests – Services like day care, attendants – Basic medicines, and care and hygiene products – Transport costs to reach cities for doctors/ organizations – Using emergency and other medical systems Even when in other languages, the material is complex. (excerpt from a Govt. website, Oct 2015) ...इनमें मस्तिष्कीय कोशिकाओं का क्षय, मस्तिष्क से प्रेरणा का कम पारेषण िथा मस्तिष्कीय कोशिकाओं के मेटाबोशिज्म के अंतिम उत्पादों का स्तथति पररवितन िाशमि है। Very few dementia-specific organizations; an example of ARDSI chapters (taken Oct 2015) © 2015, Swapna Kishore 31
  32. 32. Projected growth in dementia Dementia will increase most rapidly in regions with higher populations. But current awareness and support is lower in these regions. © 2015, Swapna Kishore 32 Dementia India Report 2010
  33. 33. The impact of dementia will increase as India “ages” People are living longer Older persons (above 60) will be a larger part of the population Life expectancy if born in... 36.62 years 49.4 years 67.47 years 75.87 years 1950-55 1970-75 2010-15 2045-50 From 8.9% in 2015 ... To 19.4% in 2050 2015 8.9% 2050 19.4%
  34. 34. The impact of dementia will increase as India “ages” People are living longer Older persons (above 60) will be a larger part of the population Life expectancy if born in... 36.62 years 49.4 years 67.47 years 75.87 years 1950-55 1970-75 2010-15 2045-50 From 8.9% in 2015 ... To 19.4% in 2050 2015 8.9% 2050 19.4% By 2050, 133.3 lakh people will have dementia (increase of 225%!) The overall population will increase by 30% So more and more families will be impacted by dementia 2015 2050 © 2015, Swapna Kishore 34
  35. 35. Families need to know the status of dementia in India • Remain alert about symptoms. Get a diagnosis – Find out more about dementia – Be alert about symptoms and consult doctors early – Don’t give up if information/ diagnosis is not easy to get • Have realistic estimates of available support. Plan accordingly. – Ensure services that claim to support dementia are genuine – Don’t assume people (or even doctors) will understand – Appreciate why families have to create their own support system • Create enough awareness around family to cope with dementia • Create a group of persons who are helpful and sensitive enough to support • Connect with other families living with dementia © 2015, Swapna Kishore 35 
  36. 36. Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints CAREGIVER ACTIONS: UNDERSTAND AND ACCEPT SITUATION © 2015, Swapna Kishore 36 Understand and accept situation
  37. 37. Understand and accept dementia • Understanding enables for realistic expectations – Gives a basis for a practical approach. Motivates to learn new ways and change habits • Without this, – Caregivers keep getting disappointed or angry. – Waste energy on things that don’t work – Failed interactions continue. Things get worse. The person with dementia reacts to family members, and there is a loop © 2015, Swapna Kishore 37
  38. 38. Understand and accept dementia • Understanding enables for realistic expectations – Gives a basis for a practical approach. Motivates to learn new ways and change habits • Without this, – Caregivers keep getting disappointed or angry. – Waste energy on things that don’t work – Failed interactions continue. Things get worse. The person with dementia reacts to family members, and there is a loop • Typically, diagnosis is not enough for understanding and accepting dementia • It usually begins happening after some major episode counselling, talking to other families, reading books, blogs, seeing movies • There are multiple factors and multiple reinforcements © 2015, Swapna Kishore 38
  39. 39. Accepting is key for effective care Different families, different care experiences Stressful care: Persons perturbed/ withdrawn more often. Caregivers are overwhelmed most of the time. Afterwards, may feel guilt, regret Extremely unhappy situation: Repeated unpleasant episodes, conflicts. Even later, caregivers see it as a black hole in their lives Smoother care: Persons relatively peaceful, satisfied. Caregivers neutral/ positive most of the time. 🔑 © 2015, Swapna Kishore 39
  40. 40. Accepting is key for effective care Different families, different care experiences Stressful care: Persons perturbed/ withdrawn more often. Caregivers are overwhelmed most of the time. Afterwards, may feel guilt, regret Extremely unhappy situation: Repeated unpleasant episodes, conflicts. Even later, caregivers see it as a black hole in their lives Smoother care: Persons relatively peaceful, satisfied. Caregivers neutral/ positive most of the time. All families need time to adjust. Families with happier outcomes give turning point as: • “I stopped getting upset once I believed he really didn’t remember” • “We changed what we expected from Amma” • “Once we understood her problems, we changed how we talked to her” • “When others told us they had similar problems, we realized she was not being stubborn. It was the effect of a disease.” 🔑 © 2015, Swapna Kishore 40
  41. 41. Diagnosis is not enough • Diagnosis and initial sessions are short and take the family by surprise: – Doctors may not explain “dementia” – Family members don’t remember specific diagnosis – Because they don’t know about dementia, family members do not know what is being said or what to expect • They don’t even know what the medicines will help with-- memory? agitation? vascular problems? • Hardly any care advice is given or remembered – Doctors often don’t give care advice – Caregivers only remember summary statements like “the psychiatrist said, keep your husband happy” – Families don’t realize their actions can affect the person’s well-being (positively or negatively) In the diagnosis session What is remembered © 2015, Swapna Kishore 41 xxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxx qra aa xx xx xzy
  42. 42. Information from doctors compared to other information • After the doctor visit, families don't get any reinforcement of what they were told • Instead, people around them say things like – “it’s just ageing” – “if you show enough love, she will be alright” – “give her more fruits” – “have you read about <xyz> miracle cure?” • Also, because of the stigma, families often hide the diagnosis and signs of changed behavior. They even hide the person at home. © 2015, Swapna Kishore 42
  43. 43. Information from doctors compared to other information • After the doctor visit, families don't get any reinforcement of what they were told • Instead, people around them say things like – “it’s just ageing” – “if you show enough love, she will be alright” – “give her more fruits” – “have you read about <xyz> miracle cure?” • Also, because of the stigma, families often hide the diagnosis and signs of changed behavior. They even hide the person at home.       📣 © 2015, Swapna Kishore 43 Messages heard by the family day and night carry more weight and are believed more The doctor’s explanations are forgotten qra aa xx xx xzy
  44. 44. What families can do • Visit the doctor again for clarifications – Have the questions ready – Ask about the dementia type and possible treatments – Ask about how it may get worse – Get addresses of services and organizations that can help • Locate reliable information to understand dementia better • Try to connect with other families living with dementia • Don’t assume that the comments and advice of others are correct – If they give wrong advice, it is you who will suffer – Most of them are repeating what they heard How can the neighbor be so sure there is nothing wrong with Amma? He has not seen the brain scans. He is not a doctor. He doesn’t even know the name of Amma’s disease or her problems. © 2015, Swapna Kishore 44 
  45. 45. Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints CAREGIVER ACTIONS: LEARN, APPLY, & REFINE CAREGIVING SKILLS. © 2015, Swapna Kishore 45 Learn, apply, & refine caregiving skills
  46. 46. Adjusting takes time • Accepting dementia takes time. But better acceptance makes it easier to adjust – Acceptance makes it easier to apply essential care skills – But acceptance is not smooth – There are good days and bad. There are doubts, loops, and reversals • Motivation reduces when others around the family refuse to accept the diagnosis – Why learn something everyone considers unnecessary? • Tendency to slip back into “diagnosis denial” because deterioration is slow – On some days it is just “like old times” • “Learning care skills” does not match the “everyone lives with elders, what’s the big deal” statements that families keep hearing Learning is more likely to be spread out. Has ups and downs. May never reach optimal level. What professionals expect: rapid and smooth learning © 2015, Swapna Kishore 46
  47. 47. Information caregivers need • Enough about dementia to – recognize how it impacts behavior – Know what drug and non-drug treatments can do – Set realistic expectations © 2015, Swapna Kishore 47 💊
  48. 48. Information caregivers need • Enough about dementia to – recognize how it impacts behavior – Know what drug and non-drug treatments can do – Set realistic expectations • Enough about dementia progression to plan care – How the symptoms will change/ increase – How long the care may take – Costs and extent of care that may be needed © 2015, Swapna Kishore 48 💊 
  49. 49. Information caregivers need • Enough about dementia to – recognize how it impacts behavior – Know what drug and non-drug treatments can do – Set realistic expectations • Enough about dementia progression to plan care – How the symptoms will change/ increase – How long the care may take – Costs and extent of care that may be needed • Basic care skills – How to interact and support – How to adapt the environment to keep person engaged and safe – How this differs from living with non-dementia elders – How to “enrich” life of the person and the entire family © 2015, Swapna Kishore 49  💊 
  50. 50. Information caregivers need • Enough about dementia to – recognize how it impacts behavior – Know what drug and non-drug treatments can do – Set realistic expectations • Enough about dementia progression to plan care – How the symptoms will change/ increase – How long the care may take – Costs and extent of care that may be needed • Basic care skills – How to interact and support – How to adapt the environment to keep person engaged and safe – How this differs from living with non-dementia elders – How to “enrich” life of the person and the entire family • Tips for implementation – Practical ideas for normal care – Practical ideas for special challenges – Some ideas of what not to expect from yourself as a caregiver © 2015, Swapna Kishore 50  💊  ₹
  51. 51. Sources of material and training • Books, manuals, blogs, videos • Training courses, workshops, interactions with qualified and experienced counsellors • Forums where caregivers share personal stories • Be careful about sources used – Which source is authoritative? Whom to ask questions? – Start with very well-established international sources, re-validate “hopeful” claims with them • Be careful about the personal data you share in forums – moderated, confidential forums are better © 2015, Swapna Kishore 51
  52. 52. Apply material to the specific care situation Existing material and training needs to be interpreted and applied • Be careful: material often assumes the caregiver is the “doer” and person with dementia is the “object” of action – No practical advice on how to persuade an unwilling person • Be careful: material often assumes – A “typical caregiver”: You need to adapt it for own situation and home care – Abundant money, time, and resources are available: You need to see what is practical. You have to be creative • Material is not be easy to apply in India – It is usually written for countries where support is better and the way of living is different – Not for Indian environment, not in Indian languages, does not have Indian examples • Material ignores some aspects of care – e.g., end-of-life-care discussions © 2015, Swapna Kishore 52 📓
  53. 53. Apply material to the specific care situation Existing material and training needs to be interpreted and applied • Be careful: material often assumes the caregiver is the “doer” and person with dementia is the “object” of action – No practical advice on how to persuade an unwilling person • Be careful: material often assumes – A “typical caregiver”: You need to adapt it for own situation and home care – Abundant money, time, and resources are available: You need to see what is practical. You have to be creative • Material is not be easy to apply in India – It is usually written for countries where support is better and the way of living is different – Not for Indian environment, not in Indian languages, does not have Indian examples • Material ignores some aspects of care – e.g., end-of-life-care discussions © 2015, Swapna Kishore 53 Caregiving manuals usually do not have tips on how to learn faster. They do not discuss how to cope with the emotional cost of dementia care. They focus on what to do. They rarely mention that mistakes are common. 📓
  54. 54. Use support services (if affordable) • Very difficult for a small family to handle all the required care for many years • Families share the work to the extent possible. They also consider services if affordable, reliable, and available. • Types of services available – Trained paid caregivers – Day care centre, respite care centre, full-time care centre – Home medical services—doctor visits, blood tests, IV and injections at home – Services to help elder get company/ occupational therapy/ physical therapy – Caregiver resources, training, support groups • Most families create their support systems using their money, their family members and close friends, and their creativity – Educate friends, relatives who are willing to listen – Modify and use support systems available for other illnesses/ ageing elders • like training an ayah to care for someone with dementia © 2015, Swapna Kishore 54
  55. 55. What caregivers can do • Learn about dementia and care. Remember... – Mistakes will happen. Everyone makes mistakes – You will forget to use what you learned – Be kind to yourself when you make mistakes © 2015, Swapna Kishore 55 
  56. 56. What caregivers can do • Learn about dementia and care. Remember... – Mistakes will happen. Everyone makes mistakes – You will forget to use what you learned – Be kind to yourself when you make mistakes • Build enough reminders to remember how dementia affects the person and how you can help – Stay in touch with dementia realities through books, caregiver stories, forums Example of pictures to remind caregivers about dementia’s impact © 2015, Swapna Kishore 56 
  57. 57. What caregivers can do • Learn about dementia and care. Remember... – Mistakes will happen. Everyone makes mistakes – You will forget to use what you learned – Be kind to yourself when you make mistakes • Build enough reminders to remember how dementia affects the person and how you can help – Stay in touch with dementia realities through books, caregiver stories, forums • Regularly review how well you have changed your habits • Use forums and counsellors for ideas and support • Avoid people who blame and criticize Example of pictures to remind caregivers about dementia’s impact © 2015, Swapna Kishore 57 
  58. 58. Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints CAREGIVER ACTIONS: HANDLE SPECIAL PROBLEMS © 2015, Swapna Kishore 58 Handle special problems
  59. 59. The special behavior challenges • Some behaviors are more difficult to handle – Usually socially embarrassing, physically difficult to clean up after, risky for person or others – Examples: smearing feaces, hitting others, shouting at night, making sexual passes, removing clothes, hitting people, stealing car keys and driving off, hiding things, repeatedly taking/ demanding medication and food • No easy answers, no easy suggestions • Socially unacceptable to mention many of these – Stigma for family or person or both – May be asked to vacate home by landlord – Family may be ostracized © 2015, Swapna Kishore 59
  60. 60. The special behavior challenges • Often receive simplistic advice that is not specific for difficult behavior – “show more love” – “spend more time” • Even if the family has ideas on what can improve the situation, they may not be in a position to make the required changes. – Problems of space, money, location, neighborhood, etc. • On approaching doctors – Medication may reduce one problem but add other problems (confusion, drowsiness) – Some behavior get worse with medication © 2015, Swapna Kishore 60
  61. 61. What caregivers can do • Talk to doctors, counsellors, and also see how other families handle it – Support groups (online or face-to-face) – Books, blogs, case studies – Sometimes it takes time to reach a suggestion that works – You may never find it • Try standard problem-solving techniques and various tips. If the problem persists, see how to reduce its impact – Reduce risk to person and surroundings – Reduce physical and emotional impact on others – Reduce social criticism and how you feel about it – Make other parts of life smoother and less frustrating • The special challenge will seem smaller if the rest of the day is better • Stay connected with support groups and non-judgmental friends © 2015, Swapna Kishore 61  📓 Not all problems can be solved. Try to find ways to reduce or solve problems, but don’t blame yourself if you can’t. ⌕
  62. 62. Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints CAREGIVER ACTIONS: BE ALERT ON DECLINE © 2015, Swapna Kishore 62 Be alert on decline
  63. 63. Stay alert for signs of decline • There are many possible reasons for decline – Does the existing care approach need refinement? – Has the environment changed? – Could it be a medical problem? – Has the dementia disease become worse? • If the cause is not dementia, resolve it • If dementia is getting worse – Don’t feel let down or overwhelmed if the decline is because of dementia. This is the nature of dementia – “Understand and accept” this decline. Find care approaches suited for this new situation © 2015, Swapna Kishore 63
  64. 64. Stay alert for signs of decline • There are many possible reasons for decline – Does the existing care approach need refinement? – Has the environment changed? – Could it be a medical problem? – Has the dementia disease become worse? • If the cause is not dementia, resolve it • If dementia is getting worse – Don’t feel let down or overwhelmed if the decline is because of dementia. This is the nature of dementia – “Understand and accept” this decline. Find care approaches suited for this new situation © 2015, Swapna Kishore 64 I thought Papa’s dementia had become worse, but fortunately we realized that his hearing aid was not working. He improved once we fixed that. Things were going on well. I’m feeling so sad he has deteriorated. We did all we could and still... Yes, it is so difficult to see this. But dementia is progressive after all...
  65. 65. Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints CAREGIVER ACTIONS: HANDLE STRESS. DO SELF-CARE © 2015, Swapna Kishore 65 Handle stress. Do self-care.
  66. 66. Dementia care affects caregivers emotionally • The person’s mood affects caregiver mood – This is more when the caregiver is tired and also facing other problems • Isolation: Caregivers don’t get other company – Too much work, can’t leave home – Others may be critical – Some old friends avoid the caregiver because caregiver is “negative” or is not “interesting.” • Difficult to watch the person declining and dying – Dementia is progressive. Things get worse in spite of all the care – This was a person the caregiver knew. Seeing the decline can be very difficult. But there is no “respite” from watching this – Also hurts to lose shared memories – Worse for caregiver spouses because planned retirement plans won’t work out now – Increasing dependence can be really difficult to see © 2015, Swapna Kishore 66
  67. 67. Dementia care can create resentment and conflict in family • Unresolved past issues with person who has dementia – Not everyone with dementia was loving and nurturing when younger. – May even have been an alcoholic/ abuser, wife-beater, or may have harassed a daughter-in-law for dowry/ caste. – Caregivers may experience resentment, disbelief, and fear. They cannot confide these problems and feelings. © 2015, Swapna Kishore 67 When younger Then the person gets dementia
  68. 68. Dementia care can create resentment and conflict in family • Unresolved past issues with person who has dementia – Not everyone with dementia was loving and nurturing when younger. – May even have been an alcoholic/ abuser, wife-beater, or may have harassed a daughter-in-law for dowry/ caste. – Caregivers may experience resentment, disbelief, and fear. They cannot confide these problems and feelings. • Future plans are affected because of the dementia – Major adjustments may affect many other family plans and eat up savings or drive family to poverty • Relationship issues can arise – One person taking up too much attention – Disagreement over care decisions and sharing of cost and responsibility – Property disputes © 2015, Swapna Kishore 68 No money or time for vacations planned earlier 🍸 When younger Then the person gets dementia
  69. 69. Caregiver may not be suited for all aspects of role • Physical handling of care work – Stamina for prolonged work – Some work may repulse (handling adult diapers, soiled clothes, etc.) – Own health problems, back problems • Learning, changing, managing are not easy – Many things need to be understood and changed – Some of these require comfort with medical concepts, like home nursing, of deciding what is a medical emergency – Many areas in life have to be planned for and managed. Constant creativity is needed • Emotional handling of care work – Watching the decline – Sense of isolation – Loss of hope. Feeling of bleak future – Ability to take tough decisions, or medical decisions – Ability to handle how this care is affecting other areas of life – End of life can be particularly difficult to handle © 2015, Swapna Kishore 69
  70. 70. Fatigue is natural and common • Care is 24 x 7 x 365, and not equally distributed between family members – Primary caregivers become more involved, and others may start getting distant • Caregiving lasts for years – But often caregivers burn themselves out by doing too much work in the initial stages (when it is not needed). Then they are exhausted by the later years – Social pressure expects them to be perfect for years © 2015, Swapna Kishore 70
  71. 71. Fatigue is natural and common • Care is 24 x 7 x 365, and not equally distributed between family members – Primary caregivers become more involved, and others may start getting distant • Caregiving lasts for years – But often caregivers burn themselves out by doing too much work in the initial stages (when it is not needed). Then they are exhausted by the later years – Social pressure expects them to be perfect for years • In some families, there is only one caregiver – Alone in taking heart-breaking decisions – Emotions closely linked to person’s situation and mood – Utter isolation, fatigue, burnout – Cannot take a break – Terrified of what will happen if they fall ill/ collapse – Extreme loss/ extreme readjustment problems when the role ends © 2015, Swapna Kishore 71
  72. 72. “Care for the caregiver” becomes another pressure for caregivers © 2015, Swapna Kishore 72 Do not get stressed. Take a break. Don’t do everything yourself. Use an attendant. Who will look after your mother if you fall ill? You must remain healthy. Daily exercise, good food, enough sleep... Take out time every day for something you like
  73. 73. “Care for the caregiver” becomes another pressure for caregivers © 2015, Swapna Kishore 73 Do not get stressed. Take a break. I know I am stressed and need a break! Will he look after my father to give me a break? I can’t afford an attendant. Will my friends pay? Don’t do everything yourself. Use an attendant. Which work can I cut down to make time for myself? And how can I sleep at night? Who will take Amma to the bathroom 3-4 times every night? Who will look after your mother if you fall ill? You must remain healthy. Daily exercise, good food, enough sleep... Take out time every day for something you like I feel bad that I can’t do all I must do. Now people tell me I am not doing “self-care.” I don’t need to feel even more bad! I’m not going to meet these counselors again.
  74. 74. What caregivers can do • Plan for self-care just like you plan for dementia care. Do it before the person needs 24x7 care. Examples of what you can plan: – Learn things that may help later, like yoga or meditation – Find services you can use when you are tired (dabba services you like) – Arrange your home so that you can fit in small, practical breaks, like listening to music, painting, coloring, music, walks, exercise – Buy things you may need later, when you will be too busy to shop • Stay connected with others. Keep them informed and involved – This is an investment. You may need to educate them and listen to criticism – But later, these persons may be helpful when you are stressed • Identify friends who can help you de-stress – Some people use different friends for different moods – Old friends may fall away. Make friends in support groups • Move away from “toxic” persons • Use helplines and support groups before you are overwhelmed © 2015, Swapna Kishore 74 
  75. 75. Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints EXPECTATIONS AROUND THE FAMILY © 2015, Swapna Kishore 75 Expectations around the family
  76. 76. Most discussions don’t include social expectations • Reasons given by professionals – We can’t change the social context – We can’t help – We don’t know enough about such things – The family should not bother about society. They should do their “duty” • Caregivers do not bring up such issues – Shame, privacy, fear of criticism – They think they are alone in such concerns • Advice often ignores such issues – So the advice is impractical and not used – Volunteers sound insensitive – Such unsuitable advice and commentary increases caregiver stress or isolation No one talks of these things. Maybe I am the only person unable to handle it. I should keep quiet, or what will they think! © 2015, Swapna Kishore 76
  77. 77. Reality: Pathetic dementia awareness in society • Misinformation, myths, stigma – Dementia symptoms are just normal ageing – Indians do not get dementia – He/ she is acting odd because he/ she is mad, stubborn, bad character, lazy – He/ she has problems because the family is cruel, greedy, and negligent Crazy  Stubborn “Not there”  Cruel Greedy Negligent • Diagnosis denied/ contested in society • Visitors make insensitive comments to the person with dementia • Because of “mental illness” stigma, family may hide person instead of looking for diagnosis and information • Exploitation: “miracle cures”, False claims by service providers and centres about being suitable for dementia © 2015, Swapna Kishore 77  =
  78. 78. Reality: Caregiving role not recognized in society • Socially assumed that this is just like living with a normal ageing adult – Even if dementia mentioned, it is assumed to be just “memory loss” • So caregivers cannot express any fatigue or frustration – They may be seen as lazy or complaining – They may get lectured instead of being helped • Even if someone wants to help, they don’t think they need to learn anything to help properly So what? All elders have problems. We all live with our elders. Why do you keep complaining? Don’t you love them? © 2015, Swapna Kishore 78
  79. 79. What caregivers can do • Create a small circle of aware people – Use authoritative literature, experts who will be believed, books, movies, videos, pictures – Have “counter explanations” for common criticisms. Be patient • Think of this effort as an investment – Do it in early stages, when the work is less • Use this circle of friends to – Get help, especially for crisis (like wandering) – Tell other acquaintances that your problems are genuine, and thus reduce criticism from others Use pictures to convey the “illness” aspect © 2015, Swapna Kishore 79 
  80. 80. What caregivers can do • Create a small circle of aware people – Use authoritative literature, experts who will be believed, books, movies, videos, pictures – Have “counter explanations” for common criticisms. Be patient • Think of this effort as an investment – Do it in early stages, when the work is less • Use this circle of friends to – Get help, especially for crisis (like wandering) – Tell other acquaintances that your problems are genuine, and thus reduce criticism from others Use pictures to convey the “illness” aspect © 2015, Swapna Kishore 80  • Create a small circle of aware people – Use authoritative literature, experts who will be believed, books, movies, videos, pictures – Have “counter explanations” for common criticisms. Be patient • Think of this effort as an investment – Do it in early stages, when the work is less • Use this circle of friends to – Get help, especially for crisis (like wandering) – Tell other acquaintances that your problems are genuine, and thus reduce criticism from others Some people will never believe you; don’t waste your time on them
  81. 81. Medical professionals, facilities do not support dementia well • Very poor understanding and support from non-specialists – They don’t know how to help persons with dementia (diagnosed or undiagnosed) – Most elderly persons have many medical conditions. If person also has dementia, the person cannot communicate and will get frightened, and the family is not believed • No medical support for home care for someone with dementia – Persons with dementia don’t agree to visit doctors. Even if they do, it is difficult to take them to clinics – This is an even bigger problem in late stage care and for end-of-life decisions • Families face problems coordinating across various specialists • Medical facilities cannot handle confused persons – Persons with dementia may get worse in clinics and hospitals © 2015, Swapna Kishore 81
  82. 82. Doctors often prescribe without explaining to family • Over-prescription of anti-psychotics is common – Even specialists tend to over-prescribe anti-psychotics • Doctors do not discuss the various medical options, the pros and cons of each drug and the possible side- effects • Doctors do not tell families about non-drug ways to help person – They confine their advice to medicines – Families do not know they can consider non-drug methods • No discussions on end-of-life options or on pros and cons of aggressive treatments like strong antibiotics, catheters, and tube feeding © 2015, Swapna Kishore 82 💊
  83. 83. Volunteers can be critical and insensitive © 2015, Swapna Kishore 83 Caregivers don’t ask for help so that they stay in control. They chose to be caregivers. Why do they complain about being are tired? If they felt love, they would never be tired. They should spend a few hours every day with their elders. But all they want to do is enjoy and have fun. 
  84. 84. Volunteers can be critical and insensitive © 2015, Swapna Kishore 84 Caregivers don’t ask for help so that they stay in control. They chose to be caregivers. Why do they complain about being are tired? If they felt love, they would never be tired. Children nowadays don’t care for their parents. They neglect them. That is why they don’t bring them for repeated checkups. They should spend a few hours every day with their elders. But all they want to do is enjoy and have fun. That family has an apartment and a car. Why can’t they spend money on their parents? Children are selfish and forget how much their parents sacrificed for them. They should move in with their parents. So what if they have to give up their jobs? Money isn’t everything. 
  85. 85. What caregivers can do For medical visits – Keep the medical records handy. Mention dementia prominently – Explain about the dementia to doctors and nurses • Refer them to the specialist or senior doctor if they don’t believe – Stay informed about medical options in dementia care – Actively discuss with doctors (senior doctors are often more open to discussions) • Ask doctors about side effects when they prescribe medicines • If things don’t improve, ask for a review of all medicines. Or take a second opinion. Discuss with others to find doctors who understand dementia – Plan in advance how you will handle an emergency trip For ongoing health of person – Try to find a doctor who makes home visits. – Do regular tests and checkups for all relevant medical areas (not just dementia) Avoid or ignore volunteers who don’t understand – Remember, they are just ignorant and impractical © 2015, Swapna Kishore 85   💊
  86. 86. Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints THE FAMILY SITUATION AND CONSTRAINTS © 2015, Swapna Kishore 86 The family situation and constraints
  87. 87. The family situation affects care • Economic status, income, saving, investments and property, existing loans, financial commitments • Age, health, and status of various other family members • Size of family, and whether living together, near each other, or spread out • Conflicts and issues within the family • Education level of caregivers • Geographic location, access to nearby services etc. © 2015, Swapna Kishore 87 
  88. 88. Assumptions that volunteers make about family situations • The family is assumed to be upper middle-class and above – Typical advice: “spend more time”, “relocate”, “Use day care”, “make home adaptations”, “buy tools”, etc. © 2015, Swapna Kishore 88 
  89. 89. Assumptions that volunteers make about family situations • The family is assumed to be upper middle-class and above – Typical advice: “spend more time”, “relocate”, “Use day care”, “make home adaptations”, “buy tools”, etc. • Underlying assumptions about primary caregivers and family – Can give up part of regular income or all the income. There are enough savings for years of dementia care. – Can handle the physical and emotional work needed for care – Time and energy can be used fully for dementia care. – Caregivers can understand available material • no language or literacy or personality constraints – They can access experts, counsellors, and doctors • no geographic constraints, no problem paying for transport, no problem transporting person with dementia – They are not affected by stigma or social disapproval – Living spaces are large enough for live-in attendants and for activities that need space and privacy © 2015, Swapna Kishore 89  
  90. 90. Care requires money • Cost components – Medicines, doctors, nurses, tests – Reaching medical facilities or paying for care at home for various problems – Products like diapers, hygiene and cleaning products, special food items for nutrition and hydration, walking sticks, wheelchair, bed rest, air mattresses, equipment for care in bed, etc. – Adjustments needed at home because of person’s safety/ privacy, etc. – Costs for actual care work • If external help used, attendants/ ayahs, day care + transport • If family members do the regular care work, then income is lost • During intense care periods and emergencies, income is lost © 2015, Swapna Kishore 90 ₹
  91. 91. Care requires money • Cost components – Medicines, doctors, nurses, tests – Reaching medical facilities or paying for care at home for various problems – Products like diapers, hygiene and cleaning products, special food items for nutrition and hydration, walking sticks, wheelchair, bed rest, air mattresses, equipment for care in bed, etc. – Adjustments needed at home because of person’s safety/ privacy, etc. – Costs for actual care work • If external help used, attendants/ ayahs, day care + transport • If family members do the regular care work, then income is lost • During intense care periods and emergencies, income is lost © 2015, Swapna Kishore 91 ₹ Income Costs This goes on for many years
  92. 92. Spending and saving patterns in India All-India 2004-2005 data for household spending and saving. Patterns are likely to be similar even now. • Income, expenses and savings – Routine expenses: Around 63% of income • for food, housing, durables, clothing. Around 4.7% of this is spent on health – Non-routine expenses. Around 13%, of income • for ceremonies, education, travel, emergencies, etc. Around 27% for medical emergencies – Savings: Usually 25% of income, • for emergencies, education, old age , house, business, durables, gifts, etc. • only around 2% households buy insurance policies – Nearly a fourth had outstanding loans © 2015, Swapna Kishore 92 (Data based on:How India earns, spends and saves: unmasking the real India / Rajesh Shukla, SAGE Publications (NCAER report of 2010) ₹ ₹
  93. 93. Spending and saving patterns in India All-India 2004-2005 data for household spending and saving. Patterns are likely to be similar even now. • Income, expenses and savings – Routine expenses: Around 63% of income • for food, housing, durables, clothing. Around 4.7% of this is spent on health – Non-routine expenses. Around 13%, of income • for ceremonies, education, travel, emergencies, etc. Around 27% for medical emergencies – Savings: Usually 25% of income, • for emergencies, education, old age , house, business, durables, gifts, etc. • only around 2% households buy insurance policies – Nearly a fourth had outstanding loans • If we combine what a family uses for health, medical emergencies and all its savings, that is around 30% of the income. – How much of it can be used for one person for years? What about other medical expenses and emergencies? © 2015, Swapna Kishore 93 (Data based on:How India earns, spends and saves: unmasking the real India / Rajesh Shukla, SAGE Publications (NCAER report of 2010) ₹ ₹
  94. 94. Spending and saving patterns in India All-India 2004-2005 data for household spending and saving. Patterns are likely to be similar even now. • Income, expenses and savings – Routine expenses: Around 63% of income • for food, housing, durables, clothing. Around 4.7% of this is spent on health – Non-routine expenses. Around 13%, of income • for ceremonies, education, travel, emergencies, etc. Around 27% for medical emergencies – Savings: Usually 25% of income, • for emergencies, education, old age , house, business, durables, gifts, etc. • only around 2% households buy insurance policies – Nearly a fourth had outstanding loans • If we combine what a family uses for health, medical emergencies and all its savings, that is around 30% of the income. – How much of it can be used for one person for years? What about other medical expenses and emergencies? • “Economic shock” (death of chief earner, sickness, crop loss, business loss) – For sickness, methods used to find money to cope: • savings (57%), loan from friends, relatives (23%), selling/ mortgaging (6%) ... © 2015, Swapna Kishore 94 (Data based on:How India earns, spends and saves: unmasking the real India / Rajesh Shukla, SAGE Publications (NCAER report of 2010) ₹ ₹
  95. 95. Savings and lost income © 2015, Swapna Kishore 95 Less than 1 per cent of households that depend on labour and agriculture as the main sources of income can sustain themselves for more than a year on their savings, the shares for ‘self-employed in non-agriculture’ and salary earning categories being seven per cent and nine per cent, respectively. ...An overwhelming 96 per cent of households feel that they cannot survive beyond one year on their current savings in case of loss of a major source of household income.... .... yet 54 per cent households claim that they are financially secure. Urban Indians appear to be even more optimistic than their rural counterparts. ... Indians do not take a long term view of their financial security... Sections 4.4.3, 4.4.4 of How India earns, spends and saves: unmasking the real India / Rajesh Shukla, SAGE Publications (NCAER report of 2010, emphasis added)  
  96. 96. So, what sort of expenses does dementia care involve? • Dementia India Report 2010 suggests urban costs as ranging from ₹ 7000 per month to ₹ 14000 per month • If a family uses up 30% of its income on this, they still require a minimum monthly income of ₹ 23,000 to ₹ 46,000 – These expenses are beyond the reach of most families in India © 2015, Swapna Kishore 96
  97. 97. So, what sort of expenses does dementia care involve? • Dementia India Report 2010 suggests urban costs as ranging from ₹ 7000 per month to ₹ 14000 per month • If a family uses up 30% of its income on this, they still require a minimum monthly income of ₹ 23,000 to ₹ 46,000 – These expenses are beyond the reach of most families in India – Only the top 2.24% can handle the ₹ 7000 expense. Only the top 0.38% can handle ₹ 14000 Using: http://timesofindia.indiatimes.com/calculator.cms © 2015, Swapna Kishore 97
  98. 98. So, what sort of expenses does dementia care involve? • Dementia India Report 2010 suggests urban costs as ranging from ₹ 7000 per month to ₹ 14000 per month • If a family uses up 30% of its income on this, they still require a minimum monthly income of ₹ 23,000 to ₹ 46,000 – These expenses are beyond the reach of most families in India – Only the top 2.24% can handle the ₹ 7000 expense. Only the top 0.38% can handle ₹ 14000 Using: http://timesofindia.indiatimes.com/calculator.cms Or just consider a few of the many expenses • Diapers: Adult diapers, at 2 a day, costing ₹ 35 to 50, for a month, that comes to ₹ 2100 per month just for diapers. • One trip in an ambulance costs ₹ 500 to ₹ 1000 (more for far flung areas) And see how difficult most families find it to handle care expenses © 2015, Swapna Kishore 98
  99. 99. Impact of increased expenses © 2015, Swapna Kishore 99 Tough decisions have to be made. • They impact current and future prospects of family members, and social interactions. • Can lead to conflict, abuse, neglect.
  100. 100. Impact of increased expenses Poor families cannot handle more expenses. Even middle- class families get deeper into debt and poverty • Apparent wealth like a car is not the same as cash needed to pay for an ambulance or diapers or attendant © 2015, Swapna Kishore 100 Tough decisions have to be made. • They impact current and future prospects of family members, and social interactions. • Can lead to conflict, abuse, neglect. But as millions rise out of poverty, millions fall in — partly because “free markets” are not free enough, and partly because of the lack of healthcare. ( “Poverty’s Two-Way Street”, Deepa Narayan, http://www.nytimes.com/2009/05/27/opinion/27iht-ednarayan.html) ...poverty is a condition, not a characteristic http://www.eldis.org/go/home&id=42500&type=Document  
  101. 101. What can caregivers do? • Accept that care will go on for years. It will be costly. Finances need to be planned • Look for ways to continue earning even when actively caregiving • Discuss with family and relatives (close and distant) how you can share work and expenses – Keep everyone informed of problems and status – Be ready to give details like “expense statements”. Remind relatives if they forget • Examine expenses to save more and spend less – Can current spending or commitments be reduced? Discuss and decide along with family – Habits and commitments take time to change. Start this as soon as you can • For investments and assets – Re-organize for the liquidity you want, invest future savings wisely • Plan for possible future relocation • Be careful before taking on new commitments like loans, expensive education © 2015, Swapna Kishore 101 
  102. 102. Balancing with other roles • Often not talked about when training / counselling on dementia – While attending trainings, conferences, a lot of advice seems do-able – When caregivers return home, they remember all the other things they need to do – They don’t know how to find the balance During trainings Back at home © 2015, Swapna Kishore 102
  103. 103. Balancing with other roles • Often not talked about when training / counselling on dementia – While attending trainings, conferences, a lot of advice seems do-able – When caregivers return home, they remember all the other things they need to do – They don’t know how to find the balance • Dementia home care does not replace other work – It gets added to other work – Other tasks cannot be ignored. Adjustments and down-sizing take time. They are not always possible During trainings Back at home © 2015, Swapna Kishore 103
  104. 104. What can be done • Caregivers – when attending trainings or discussing care, explain your time and energy constraints – ask for practical and time-saving ways to do things – talk to other caregivers to share tips – look at various time management and financial planning advice – don’t assume you have to be perfect – don’t feel guilty if others don’t understand your problems • Volunteers/ professionals – Help families living with dementia with practical ways to cope • Think of what they can do differently within the time and money they have – Avoid anything that is critical or blaming © 2015, Swapna Kishore 104  
  105. 105. What can be done • Caregivers – when attending trainings or discussing care, explain your time and energy constraints – ask for practical and time-saving ways to do things – talk to other caregivers to share tips – look at various time management and financial planning advice – don’t assume you have to be perfect – don’t feel guilty if others don’t understand your problems • Volunteers/ professionals – Help families living with dementia with practical ways to cope • Think of what they can do differently within the time and money they have – Avoid anything that is critical or blaming © 2015, Swapna Kishore 105 It is said that "there are four kinds of people in the world; those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers.“ from Shaji K S, Reddy M S. Caregiving: A Public Health Priority. Indian J Psychol Med 2012;34:303-5  
  106. 106. SUMMING UP... © 2015, Swapna Kishore 106 Dementia prevalence. Support available. Expectations around the family Handle stress. Do self-care. Understand and accept situation Learn, apply, & refine caregiving skills Handle special problems Be alert on decline Caregiver actions Overview of dementia & care The family situation and constraints
  107. 107. Support is very poor, so caregivers have to be informed and active • Family caregivers are essential for dementia care in India • Awareness and support is extremely low. Caregivers face several challenges and difficulties – They need to get information, plan care, keep refining what they do, and support the person throughout the dementia journey • They have to maintain multiple roles and responsibilities – They have to explain the situation to others and get support, and plan for their own self-care • This is needed because dementia is stigmatized and caregiving is not supported in our society – They should have realistic expectations of what they can achieve © 2015, Swapna Kishore 107 
  108. 108. Volunteers need to “get real” to give useful help • Some things that professionals and volunteers can do – Improve dementia awareness and sensitivity within the overall medical and volunteer community – Understand what dementia home care involves – Be sensitive and realistic while interacting with caregivers. – Find practical actions to suggest to caregivers – Create affordable (or free/ subsidized) services and support systems for families living with dementia – Spread dementia awareness within the public © 2015, Swapna Kishore 108 
  109. 109. Thank you! © 2015, Swapna Kishore 109 English site for dementia caregivers in India: http://dementiacarenotes.in Hindi site for dementia caregivers: http://dementiahindi.com Blog for sharing personal experiences: http://swapnawrites.wordpress.com Videos: http://www.youtube.com/user/swapnawrites, http://youtube.com/user/dementiacarenotes Presentations and documents: http://www.slideshare.net/swapnakishore/ Presentation by Swapna Kishore Email: cyber.swapnakishore@gmail.com Main website: http://dementiacarenotes.in

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