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Under-discussed challenges of dementia home care in India (Ardsicon2017)

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There are many serious challenges faced by home caregivers that are not acknowledged and discussed openly. Lack of such discussion makes many caregivers feel isolated and unsupported. General advice given may be inappropriate and insensitive, It results in unintended silences because everyone assumes these issues are rare.

This presentation was made at the International Conference on “Advances in Dementia” & “XXI National Conference of ARDSI” held on 22nd, 23rd & 24th September, 2017 at Kolkata (India). It discusses four serious areas that pose extreme challenge using dementia home care in India as the context. Data is shared to show how serious and prevalent these are, and why we should not ignore these. The purpose of the presentation is to create some recognition around these under-discussed issues in the hope that this will enable creative approaches and better support. The four areas discussed are: Financial problems; Situations where caregivers have a past history of being abused; Lack of support to understand, believe, and begin acting on a diagnosis; and Lack of explanations and support for late-stage dementia care.

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Under-discussed challenges of dementia home care in India (Ardsicon2017)

  1. 1. Under-discussed challenges of dementia home care in India by Swapna Kishore (cyber.swapnakishore@gmail.com) International Conference on “Advances in Dementia” & “XXI National Conference of ARDSI” 22nd, 23rd & 24th September, 2017, Kolkata (India)
  2. 2. Dementia care discussions: Some serious issues are ignored • There are many serious challenges faced by home caregivers that are not acknowledged and discussed openly. • Lack of such discussion makes many caregivers feel isolated and unsupported. General advice given may be inappropriate and insensitive • Unintended silences: everyone assumes these issues are rare • Open discussions on such challenges will enable creative approaches and better support. © 2017, Swapna Kishore 2
  3. 3. There are a wide range of under- discussed topics • In this presentation, we discuss four such topics: • Financial problems • Situations where caregivers have a past history of being abused • Lack of support to understand, believe, and begin acting on a diagnosis • Lack of explanations and support for late-stage dementia care • Of course, there are other under-discussed issues This presentation aims to create some recognition around some under-discussed serious issues that home caregivers face Also, for the 90% who remain undiagnosed, issues revolve around worrisome behaviour and decline, not knowing about progression, treatment or care. This is a major area, worth a separate discussion by itself ₹ © 2017, Swapna Kishore 3
  4. 4. Financial problems 4 ₹ © 2017, Swapna Kishore 4
  5. 5. Affordability of Care Expenses • Urban costs for dementia care range from ₹ 7000 to ₹ 14000 per month (Dementia India Report 2010, Box 3.1) • Assuming around 30% of its income is used for dementia care, the family requires a monthly income of ₹ 23,000 to ₹ 46,000 • >97% cannot afford ₹ 7K • >99% cannot afford ₹ 14K Using: http://timesofindia.indiatimes.com/calculator.cms which is based on Indian Readership Survey 2011, Q4 data Only the top 2.24% of India can handle a care cost of ₹ 7000 (monthly income > 23,000) Only the top 0.38% of India can handle a care cost of ₹ 14000 (monthly income > 46,000) © 2017, Swapna Kishore 5
  6. 6. In fact, most families in India earn less than what a trained attendant gets paid A caregiver in Mumbai in an interview mentions the monthly cost of one trained attendant (one shift) as ₹8100 for one month (interview from 2009)[1] More than 83% of Indian families earn less than what a trained attendant has to be paid Using: http://timesofindia.indiatimes.com/calculator.cms which is based on Indian Readership Survey 2011, Q4 data 6 [1]: https://dementiacarenotes.in/kalpana-interview/ © 2017, Swapna Kishore
  7. 7. Many care costs are unaffordable In 2011, a household income of just ₹ 23,000/= per month placed the family in the top 3% Imagine how each important/ essential cost would impact a family, for example: • Adult diapers, at 2 a day, costing ₹ 35 to 50 each, requires ₹ 2100 per month just for diapers • A one-way trip in an ambulance costs ₹ 500 to ₹ 1000 (higher for far flung areas) Using: http://timesofindia.indiatimes.com/calculator.cms which is based on Indian Readership Survey 2011, Q4 data Caregivers may hesitate to mention money problems out of a sense of privacy or shame. But these are very common problems © 2017, Swapna Kishore 7
  8. 8. And a peep into the neglected rural India: “92% rural homes run on less than ₹10,000 per month” From: http://timesofindia.indiatimes.com/india/92-rural-homes-run-on-less-than-Rs-10000-per-month/articleshow/47931716.cms From a Times of India report of July 4, 2015, sharing data from the Socio-Economic and Caste Census (SECC) conducted in 2011-12: …the Socio-Economic and Caste Census (SECC) released on Friday says that a staggering 92% of rural households reported their maximum income below Rs. 10,000 per month. Nearly three quarters of all rural household said that the income of the highest earning member was Rs. 5,000 or less © 2017, Swapna Kishore 8
  9. 9. Care costs have many components • Medicines, doctors, nurses, tests • Reaching medical facilities or paying for care at home for various medical 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 of paid attendants if used ₹ Income Costs This goes on for many years © 2017, Swapna Kishore 9
  10. 10. Income may reduce because family members have to take on care work • Families make many changes to take out time on for care work. Such changes may reduce their income • Most Indian families cannot afford for a trained helper. So they give up their jobs or switch to part-time jobs to do the care tasks • Even with a part-time helper, family members may have to reduce outside work to manage care • Income (and maybe the job) is also lost during intense care periods and emergencies when caregivers have to take extended leave • When caregivers stop work for long periods, their ability to resume work later also goes down I used to work as a maid in four houses. But two of them dismissed me when I took ten days leave last month to look after my ill mother - they wanted someone who would not take leave… © 2017, Swapna Kishore 10
  11. 11. Reduction in earnings is a common situation In a survey of American caregivers conducted by the Alzheimer’s Association (US), 13% had to go from working full-time to part-time, 11% had to take a less demanding job, and 11% had to give up work entirely. In the 10/66 Dementia Research Group studies in Latin America, India and China, the median proportion of caregivers who had given up or cut back on work to care across 11 sites was 33.3% (interquartile range 22.9- 37.0%). From: World Alzheimer Report 2013: Journey of Caring -- An analysis of long-term care for dementia (Page 32)  © 2017, Swapna Kishore 11
  12. 12. Money management also affects funds for care • Sometimes, families lose part of their money because the person with dementia may have made bad decisions/ been cheated who took advantage of the person’s confusion • Liquidity may be a problem as money may be mainly locked in investments and property • Sometimes, the money may be in the name of the person with dementia, or in joint holdings, which are not available for care • For example, the person with dementia may be having money, but refuses to give the money out of suspicion, or the person can no longer operate an account, or sell a property © 2017, Swapna Kishore 12
  13. 13. Families make difficult choices between expenses for various items These cost-cutting measures impact current and future prospects of various family members This often leads to some family members feeling unhappy. There may be conflict, abuse, and neglect Even upper-middle- class families have to struggle What can we cut down? © 2017, Swapna Kishore 13
  14. 14. Families may dip into savings or take loans to meet expenses • Dipping into savings reduces the buffer the family has against emergencies. Loans mean EMIs have to be paid • Families may be driven deeper into debt and poverty • For most Indian families, expenses of extended care are a setback they find it very difficult to recover from 14 ₹ ...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… 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)  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…  © 2017, Swapna Kishore
  15. 15. What can we do? Pranayama and music therapy sound nice, but how do I pay for my son’s admission? • We can discuss duration and costs of care with caregivers. Ideas can be shared on things like: • Ways to budget, invest, and ensure liquidity • Ways for continue earning even after caregivers are busy and home-bound. • Ways to share costs with relatives • Ways to reduce costs for care work, home modifications, essential care products, etc. © 2017, Swapna Kishore 15
  16. 16. What can we do? • We need to work vigorously on actions like getting subsidised medicines and supplies, get tax cuts, sponsorship for families coping with dementia, setting up free day cares, appropriate employment opportunities, etc. • In the initiatives for spreading dementia awareness and supporting care, we must not forget rural India! • Not only do they face severe problems of poverty and unemployment, it is also much more costly and time- consuming for them to reach places where they can get medical help, information, etc. • We must stop treating dementia as a problem of the urban, advantaged classes… an implicit choice we make in how we choose initiatives © 2017, Swapna Kishore 16
  17. 17. Issues of Past Abuse © 2017, Swapna Kishore 17
  18. 18. Possible history of abuse between the person with dementia and the caregiver • The person who now has dementia may have abused the caregiver in the past • A caregiver who has been hurt and damaged by past abuse may find it difficult to adjust to a caregiver role • In cases where the abuse was severe, it may be unrealistic and unfair to expect the caregiver to provide intense care for many years Problems of abuse when younger Then the person gets dementia (Examples: physical/ emotional/ sexual child abuse, domestic violence, dowry problems, etc.) © 2017, Swapna Kishore 18
  19. 19. Abuse is far more common than we want to notice • Abuse happens at all levels: • Child, young adult, adult, elders • Boy, girl, man, woman • Different types commonly talked about: • Child abuse: physical, emotional, sexual, girl-child neglect • Women and partners: Domestic violence, Intimate Partner Violence • Dowry problems • Surveys show that these are quite significant in our society © 2017, Swapna Kishore 19
  20. 20. Take the example of physical abuse of a child • 48.8% of young adults (age 18-24 years) said in a survey that they had been physically abused in childhood • Type of abuse reported: • Included 36.0% being beaten by stick and 7% being kicked • Majority reported the abuse was on several occasions, or even frequent • 60.35% were abused by parents • 13.57% said that the physical abuse left permanent marks on their body. 12.56% had needed medical treatment Data and quotes above from Study on Child Abuse, 2007, Ministry of Women and Child Development, Government of India, 2007 The young adult respondents were both male and female, largely educated, around 49% being graduates or above every tenth young adult respondent from the study sample was subjected to physical abuse of a serious nature  © 2017, Swapna Kishore 20
  21. 21. Or consider domestic violence • A published study[1] reported that nearly two in five (37 percent) married women have experienced some form of physical or sexual violence by their husband • The study reports that almost two in five women who experienced physical or sexual violence reported they had injuries • 36 percent had cuts, bruises or aches; • 9 percent had eye injuries, sprains, dislocations, or burns • 7 percent had deep wounds, broken bones, broken teeth, or other serious injuries [1] From Briefing kit, “Domestic Violence”, which uses data from Chapter 15 of International Institute for Population Sciences (IIPS) and Macro International. 2007. National Family Health Survey (NFHS-3), 2005–06: India: Volume I. Mumbai: IIPS. © 2017, Swapna Kishore 21
  22. 22. We ignore the ‘abuse’ aspect in caregiver support • Training programs and manuals don’t include tools and techniques to help caregivers overcome past emotional scars • We do not discuss abuse openly because of social conventions and family pressures • Social media, sessions with volunteers, news articles, social circles near us, assume that there was no past abuse. Instead, we hear statements like : • Our parents always loved us. Now it is our turn to care for them • Our parents made so many sacrifices so that we could get what we wanted • Perfect love and perfect parenting is assumed to be universal. Severe abuse in the past is not even considered as a possibility © 2017, Swapna Kishore 22
  23. 23. Caregiving is tougher for a caregiver who was abused • The hurt, pain, humiliation, and loss of self-esteem caused by abuse lasts for years • Though abused persons may continue to keep some contact and interactions to maintain “normalcy” in social appearances, this does not mean they can handle care work • The continued contact required during caregiving can bring up multiple reminders of past hurts • This can make care stressful even for someone who suffered mild abuse that others expect them to “forget and move on” • Those who suffered severe abuse may find it impossible to care for their past abuser Given the shroud of silence and disapproval around any mention of past abuse, who can caregivers ask for support when they are overwhelmed by past experiences? © 2017, Swapna Kishore 23
  24. 24. When I was young my uncle had tried to rape me, and no one in the family believed me. Now, Uncle has dementia, and he has no children – and my family expects me to share the caregiving. This is extremely difficult. Examples from conversations with caregivers All through my childhood, my parents favoured my brother and I was called a burden because I was a daughter. Now, though I am doing the care, they still value him more though he doesn’t even visit. © 2017, Swapna Kishore 24
  25. 25. Examples from conversations with caregivers Father used to beat my mother and me when he was drunk. Now I and my mother have to look after him. I don’t want to, but my mother says it is her duty. There is no one else to look after him. I help her because I can’t let her do it alone. I am living with them. My marriage has broken because of this. I am very stressed. © 2017, Swapna Kishore 25
  26. 26. Caregivers may feel judged and unsupported, and hence withdraw • Caregivers usually don’t feel comfortable talking about their past experiences, especially if they hear a lot of “our parents always love us” statements. • When some caregivers use veiled mentions to start the topic, like “he was always very angry with us”, they feel silenced by typical responses. They may stop sharing their real problems • Some examples of responses: “he did it because he loved you and wanted you to be the best”, or “forget the past, he is your father, it is your duty” , “be positive and loving”, “do your dharma” Caregivers who were severely abused in the past may end up withdrawing. They may thus get the least support © 2017, Swapna Kishore 26
  27. 27. What can we do? • We need to create safe discussion spaces that encourage and support caregivers to talk about their real issues • We should not assume perfect family history. We need to stay clear from generation-bashing/ daughter-in-law bashing statements. • Listening is important. This will ensure any suggestions we give are more relevant. • If the caregiver seems to hesitate, we can gently try to get a better understanding of the family dynamics. • Our training programs and material can include suggestions for caregivers facing issues because of their past. © 2017, Swapna Kishore 27
  28. 28. Lack of support to understand, believe, and begin acting on a diagnosis © 2017, Swapna Kishore 28
  29. 29. There is a time-gap between getting a diagnosis and modifying the care approach for the person • Families take time to understand and believe a diagnosis, and to start looking for ways to modify their care approach. In fact, they may ignore the diagnosis for years, or even forever The underlying disease gets progressively worse. The symptoms get worse. The environment and way of helping need more and more adjustments to be suitable for the person Diagnosis is often only in mid-stage dementia Family members accept the dementia and try to give suitable care We don’t help families minimise or close this gap. © 2017, Swapna Kishore 29
  30. 30. The ‘dementia’ diagnosis/ label • How people respond to a diagnosis depends on: • Their familiarity with the word “dementia” (or “Alzheimer’s”) • Their information and impressions about dementia • Internationally, getting a diagnosis brings aspects like • Positive reactions on getting a diagnosis are around some relief at getting an explanation for the problems being faced • Negative reactions on getting a diagnosis are around despair and also reactions of others: the person is “not quite there” attitude, loss of personhood and respect almost overnight • Fear of a dementia diagnosis is another factor: US/ UK reports have said this is greater than the fear of developing cancer, heart disease, diabetes or stroke[1] [1]: World Alzheimer Report 2011, The benefits of early diagnosis and intervention © 2017, Swapna Kishore 30
  31. 31. Our awareness affects how we understand and act on a diagnosis • In India, only a small fraction of persons get diagnosed. People view the label “dementia” from the prism of poor awareness and inadequate vocabulary: • Very low levels of familiarity with the word dementia/ Alzheimer’s, and no mental image of what to expect • Use of Indian language equivalents that don’t convey the seriousness of the situation, or may stigmatize it • A lot depends on how the doctor/ volunteer explains it, how shocked the family is, and whether the doctor/ volunteers stay in touch with the family © 2017, Swapna Kishore 31
  32. 32. A typical scenario of when the family hears “dementia” Most families have not heard the word “dementia” or “Alzheimer’s” when they get the diagnosis. This is true even of educated, English-speaking, middle- class families. We were not aware of the name Alzheimer’s Disease. We did not even have a vague idea about how bad and scary our lives would be, going forward[1] [1] from a caregiver narrative in Dementia News - ARDSI Newsletter, January - April 2017  © 2017, Swapna Kishore 32
  33. 33. A major problem: how dementia is explained in Indian languages For example, the diagnosis may be conveyed using stigmatizing words When my mother was diagnosed with Alzheimer dementia, we had never heard those words before. We asked the doctor for the disease name in Hindi. He hesitated for some time, but when we insisted, he said “paagalpan.” We were shocked. After we returned home, my brothers made sure my mother remained well-hidden from outsiders. We could not let others know we had insanity in our family. (From a conversation with a son in a middle-class Hindi-speaking family about a visit to a senior specialist in a reputed hospital in a metro.) © 2017, Swapna Kishore 33
  34. 34. There are many ways dementia is translated; some are stigmatizing • For example, the authoritative word for dementia in Hindi is either “dementia” or “manobhransh” – neither of these is well- recognized. • The alternate terms used instead can be quite damaging • Unfortunately, the most common Hindi translation is paagalpan (madness) May 2017 screenshots from Commission for Scientific & technical Terminology http://cstt.nic.in/index.asp & Google translate http://translate.google.com/) © 2017, Swapna Kishore 34
  35. 35. Or translations can be mild phrases that create a different problem • Take Alzheimer’s. This has no Hindi equivalent as it is a person’s name, so we just write “Alzheimer’s” in Devanagari script for it. • But various awareness campaigns have established the Hindi equivalent for AD as “bhoolne ki beemari” (the disease of forgetting). This is the same Hindi phrase as is used for amnesia. • This “amnesia” equivalence is also true of other Hindi words for dementia/ AD • Not surprisingly, I get queries from college students facing memory problems Playing around at Google translate http://translate.google.com/ (May 2017) © 2017, Swapna Kishore 35
  36. 36. Sometimes families depend on local terms used for changed behaviour Commonly used Indian language terms used for the changed behaviours seen in dementia don’t indicate any underlying medical condition. They usually indicate things like memory loss, changes associated with becoming old, and insanity Konkani: ‘Nerva frakese’ (tired brain) Malayalam: ‘Chinnan’ (childishness) Examples of words used in India for changed behaviors seen in dementia. They do not recognize that these behaviors could be caused by an organic disorder/ medical problem. (based on multiple sources, including the 10/66 Dementia Research Group) Hindi: ‘sathiyaana’: (getting 60+ and hence “senile”) © 2017, Swapna Kishore 36
  37. 37. Even English-speakers may be familiar with “dementia” through negative uses Unfortunately, the close association established between dementia/ Alzheimer with forgetting/ confusion and with mental illness has resulted in the words being used in normal language while depicting confusion and forgetfulness. Here, for example, are some phrases from essays on utterly unrelated topics: “When the establishment is going senile, it feels everyone else has Alzheimer’s.” or “If you have been lucky to encounter such an odd creature, what do you think is wrong with him? Senile dementia?” Worse, dementia and Alzheimer are used to mock people, especially politicians. In one instance, some workers of one party sent Alzheimer pills to a senior leader of another party as a “unique” protest. From a study of 650+ articles published in India’s top 3 English and top 3 Hindi newspapers, detailed in a two-part blog entry. Above excerpts are from Part 2, https://swapnawrites.wordpress.com/2016/02/04/newspaper-coverage-dementia-india-part-2/ Would people send diabetes medicines to mock political opponents?  © 2017, Swapna Kishore 37
  38. 38. The doctor’s explanation is often inadequate for the family • Typically, initial doctor sessions are short. The information conveyed is usually just the diagnosis name, a bit on early symptoms, and a prescription. Caregiving tips, or pointers to care support resources are missing. • As families are unfamiliar with dementia, they cannot understand or retain much of what they are told. Their subsequent behavior depends on what they remember, how well they understand and trust the diagnosis, the responses and expectations everyone has, etc. • We have no system to ensure the family’s continual engagement with a doctor or with the health care system. Families need multiple sessions to absorb the information about dementia and to start the slow process of accepting and adjusting. © 2017, Swapna Kishore 38
  39. 39. For mild symptoms, the diagnosis may not convey seriousness • Sometimes, doctors explain dementia using terms like “age-related problem”, “happens to people who grow old”, “seen in many old people”. • If the symptoms are relatively mild, families assume this means the problems are part of normal ageing. They may not consider the diagnosis serious. • Based on this initial explanation, families do not think of this as a progressive disorder. They expect the medicine will solve it. They don’t try to find out more or plan more. • When the improvement due to medication tapers off, they start hunting again, thinking that the initial diagnosis or medicine was wrong.  © 2017, Swapna Kishore 39
  40. 40. But often, the family is dissatisfied with the diagnosis • In most situations, the families contact doctors because they faced some serious problems. They had not gone to the doctor for what they considered normal ageing problems. • Examples of problems that lead to diagnosis-seeking: the person gets lost and confused in familiar settings, acts very uncharacteristically violent or cannot do even simple tasks. • The family wants medicines that will change back the behaviour to “normal. • If the explanation of the diagnosis or the treatment does not meet what the family hoped for, they are dissatisfied with the diagnosis. 💊 © 2017, Swapna Kishore 40
  41. 41. For worrisome symptoms, an extended search for a cure is common; it uses up too much time and exhausts the family Dissatisfied families keep looking till they find a cure that makes everything “normal” again. Outsiders, too, expect the family to keep looking for a “cure.” The resulting extended search goes well beyond seeking a second opinion, and is exhausting. Only when all avenues seem exhausted do families accept the diagnosis. Shafia said, “Wherever anyone would say, we would show him. We showed him here, we showed him there, there was no place we left or where we did not show him.” …Nina… made Karamjit undertake speech therapy, yoga, golf and reading and writing, in addition to giving him allopathic, Ayurvedic and herbal treatments…. From Unforgotten: Love and the Culture of Dementia Care in India, Bianca Brijnath (Orient Blackswan Pvt Ltd, 2014)   © 2017, Swapna Kishore 41 Shafia herself conceded, ‘[When] no one said he was going to get better, that was it.’
  42. 42. How outsiders respond affects what the family does • Relatives, friends, neighbours, and colleagues react to the diagnosis based on things like: • perception of the symptoms and the family’s care • their knowledge (or ignorance) about dementia • their overall impression of families where adult children are looking after elders • Perceptions of how outsiders may react, in turn, affect how openly the family shares the diagnosis If the diagnosis is perceived as a label of “paagalpan”, for example, the family will probably hide the diagnosis and the person. They will be worried about the family’s social standing, marriage prospects, employability, etc. © 2017, Swapna Kishore 42
  43. 43. Outsider reactions are diverse For example: • They may be dismissive about the problems and the need of any diagnosis, especially if the visible symptoms are mid • They may feel the problems are because the family is not taking good care, and see continuing problems as continued neglect or cruelty by the family • They may see the problems as a sign of neglect, lack of love, or even cruelty by the family • The diagnosis may be seen as “incorrect” and outsiders may feel the family needs to look for a “better diagnosis”, one which has a cure • The diagnosis may be viewed with suspicion, as an attempt of a family being greedy or covering up neglect © 2017, Swapna Kishore 43
  44. 44. Disbelief and suspicion around the “dementia” diagnosis is common General suspicion around adult caregivers, fear of elder abuse, and a diagnosis being seen as “mental” can make things really difficult socially I have a medical certificate of the psychiatrist who has been attending to Father. When I told my relatives about it, they said I must have influenced or bribed the psychiatrist to give such a certificate and that I was trying to get Father declared mentally unfit to get his money. (from a caregiver interview at https://dementiacarenotes.in/nayantara-interview/ ) © 2017, Swapna Kishore 44 
  45. 45. Outsiders often ignore the diagnosis and either blame the adult children or blame the person with dementia • A diagnosis may not change how outsiders treat the person or family • For example, if father-in-law with dementia keeps forgetting he ate breakfast and tells neighbours his daughter-in-law starves him, they assume this is a case of elder abuse. • Outsiders may also mistreat the person with dementia • For example, if the person is disoriented, aggressive, withdrawn, or showing socially unacceptable behaviour like using bad language or sexual misbehaviour • Lack of acceptance by outsiders adds to the pressure of family caregiving  Cruel Greedy Negligent Crazy Stubborn “Not there” Outsiders have no incentive to understand the diagnosis or change their interactions with the person and family © 2017, Swapna Kishore 45
  46. 46. What can we do? • Families getting a diagnosis should be helped to appreciate the seriousness of dementia and its impact without being alarmed or fearing stigma. Repeated explanations and counselling are needed. • We need to stay in touch with diagnosed families to help them absorb the information, and to resolve queries and doubts caused by the myths and misinformation around dementia in society. • We need good, standard, well-understood ways to explain dementia in terms of what Indian society understands. We also need these in Indian languages. • Also, in general, better dementia awareness in society may reduce societal pressure on the family. © 2017, Swapna Kishore 46
  47. 47. Issues related late-stage dementia care 47 © 2017, Swapna Kishore 47
  48. 48. Late stage care • This is an inevitable, final phase of dementia. • By this stage, the person with dementia is almost totally dependent on caregivers. • The person is mostly confined to a wheelchair or bed. Cognitive impairment is severe. There are physical complications. Problems faced by the person include problems in eating and swallowing, bladder and bowel incontinence, inability to communicate, inability to recognize people and familiar objects, breathing difficulties, respiratory infections, etc. • Other major diseases and medical complications may also be present. • In order to handle care for late-stage persons, caregivers need to know about it and prepare for it. They need to be either able to do it at home, or find suitable places they can place the person in for such care. © 2017, Swapna Kishore 48
  49. 49. Where do persons in advanced dementia stay? • In high-income countries with better support for dementia • many advanced stage persons live in full-time care facilities suitable for persons with dementia • For home-care , many services, such as palliative care and emergency support and support for hospital trips are available Estimates of the proportion of all people with dementia living in care homes in high income countries vary from 30- 40% in the USA, 35-50% in the UK and 50% in Canada From: World Alzheimer Report 2013: Journey of Caring -- An analysis of long- term care for dementia (Page 33)  © 2017, Swapna Kishore 49
  50. 50. What are the options in India? • Typical old age homes and private care homes do not accept persons with dementia • Private facilities usually have admission criteria that state that they will only accept persons who are mentally competent • So, persons in advanced dementia either continue to stay at home, or be placed in one of the extremely few facilities designed specifically for persons with dementia Outside India, the picture seems very different. As per the ADI report 2013, “There is evidence to suggest that, among users of long-term care, people with dementia are over- represented among care home residents.” From: World Alzheimer Report 2013: Journey of Caring -- An analysis of long- term care for dementia (Page 33) © 2017, Swapna Kishore 50
  51. 51. Negligible full-time care capacity compared to the demand 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠 41 lakh elders had dementia Less than 2000 Care centre (day-care plus full-care) capacity was: In India, in 2015 Figure adapted from the infographic, Dementia in India, 2015 https://www.slideshare.net/swapnakishore/dementia-india-2015-infographic In almost all cases, therefore, late-stage dementia care is done at home by family caregivers However, support like palliative care support or other required home health services suitable for dementia are negligible, expensive, and very localized in availability © 2017, Swapna Kishore 51
  52. 52. Late-stage care poses special challenges • Families are already stressed after years of caregiving. They are low on money and energy. But care at this stage needs more attention and money. • Caregivers need new skills for this care. They have to do home- nursing for someone almost fully dependent and cannot explain their needs. They have to set up the home for such care. • Situations needing medical attention are frequent and difficult to handle due to fragility and reduced mobility. For example: • Regular check-ups, tests • Treatments for infections, dehydration, etc. • Major problems that require trips to the hospital • Multiple medical conditions and coordination between specialists • Need for end-of-life decisions • Visible deterioration and closeness to death – this can be very draining emotionally. Bereavement is tough to handle. © 2017, Swapna Kishore 52
  53. 53. Alas, late-stage dementia is rarely covered in articles & awareness talks Published newspaper articles mostly talk of memory loss, and sometimes of some changed behaviours seen in early and mid-stage dementia. Late-stage dementia’s extreme dependence and physical complications are not mentioned. Many aspects of dementia were neglected in almost all articles, such as the duration, progressive nature, the changed and difficult behaviour, possibility of early onset, possibility of initial symptoms other than memory loss, increased dependence and reduced mobility in later stages, etc. For example, some articles said things like “a person may even forget the names of family members” as if that was the worst that could happen, and ignored problems of later stages, like persons not being able to do even simple tasks, incontinence, inability to swallow, becoming bedridden, etc. From a study of 650+ articles published in India’s top 3 English and top 3 Hindi newspapers, in a two-part blog entry. Excerpts, emphasis added, are from Part 2, https://swapnawrites.wordpress.com/2016/02/04/newspaper-coverage-dementia-india-part-2/   © 2017, Swapna Kishore 53
  54. 54. Many families are unprepared for this phase • Decline to this stage is sometimes abrupt, such as after a serious infection, etc. Unprepared families are taken by surprise, and struggle to handle it • They may not have decided which family member will handle this (which house, which sibling) • Cost-sharing may not have been discussed • Information-seeking for decisions regarding end-of-life discussions may not have taken place • They don’t know home nursing • Volunteers are unable to support this stage as they have very little experience of this. Advice, if any, is superficial and cliched • Because the person needs 24x7 care, the caregiver may get isolated from support groups and others • This phase may last for years. Families may not be able to pace themselves for it © 2017, Swapna Kishore 54
  55. 55. What we can do • Given that, in India, late-stage care will most probably be done at home, we need to alert families in time to understand and prepare for this stage • This includes explaining the symptoms at this stage, the preparation and skills needed for care, the discussions the family needs to have in advance, etc. • We also need to help families put together whatever support for care they can get for this stage depending on their means and their location, etc. • We can share data and suggestions to help them make difficult decisions and get palliative care • Another area is counselling to ease the emotional stress and grief of late-stage care © 2017, Swapna Kishore 55
  56. 56. We need to be open about discussing diverse care situations, so that we can support them better © 2017, Swapna Kishore 56
  57. 57. Many of us are concerned about dementia caregivers • We know caregiving is stressful and overwhelming and want to help • There are many areas we address through awareness programs, when talking to caregivers, designing interventions, creating services, etc. • Typical areas are basic awareness of initial symptoms of Alzheimer’s, and training programs covering topics like communication, helping persons with dementia, and person-centric care, etc. • The reach of most such work is educated families who are middle-class and above, typically living in state capitals © 2017, Swapna Kishore 57
  58. 58. However, our efforts have limited reach and limited applicability given the diversity of care situations • Caregiving situations are far more diverse that what we implicitly assume when trying to support dementia care • Most caregivers of persons with dementia do not even get a diagnosis and they don’t know the person has dementia • They may not have understood the diagnosis • They may have a diagnosis, but the available advice and suggestions are inapplicable to them given the realities of their lives © 2017, Swapna Kishore 58
  59. 59. By opening up to the range of care situations, we can support a wider section of dementia care situations • This presentation briefly covered some areas usually ignored when trying to support caregivers. There are other such topics. • Some examples: Families facing very challenging behaviours like sexual misbehaviour and disinhibition, major physical violence, etc., families with major internal conflicts, medically complicated situations, situations where families cannot find a way to balance between multiple important responsibilities, etc. • We need to create spaces where we can listen to families facing the currently under-discussed and under-supported problems. This will enable generating solutions and suggestions more feasible and applicable to a larger section of families living with dementia. © 2017, Swapna Kishore 59
  60. 60. Let us, then, open our hearts and our discussion spaces to diverse care situations… …and also remember that we too are, or will be, affected by how open we are in addressing caregiver issues… 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 © 2017, Swapna Kishore 60
  61. 61. Thank you! 61 English site for dementia caregivers in India: dementiacarenotes.in Hindi site for dementia caregivers: dementiahindi.com Blog for sharing personal experiences: swapnawrites.wordpress.com Videos: www.youtube.com/user/swapnawrites, www.youtube.com/user/dementiacarenotes Presentations and documents: www.slideshare.net/swapnakishore/ Presentation by Swapna Kishore Email: cyber.swapnakishore@gmail.com Main website: dementiacarenotes.in © 2017, Swapna Kishore

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