Despite the rising number of people with dementia, awareness of the problem and support for caregivers is abysmal,says DIVYA SREEDHARAN. Where will weget nurses/helpers we can trust and who are also trained in dementia care?
very time Radha Nair, a retired English professor in Kozhikode who teaches part-time, needs to go out for a few hours, she has to lock the gates. It’s the only way to ensure her husband V. Sreedharan Nair, doesn’t wander off. He has dementia. Radha and Sreedharan Nair are 70 and 82. They are my parents.
A local security agency sends someone home to stay with my father every time my mother goes to work. My father is not bedridden, yet. But he needs supervision. He used to be physically aggressive, argumentative and abusive. Now he is subdued and increasingly needs help with daily activities. A trained helper comes home thrice a week to shave and bathe my father. My mother has help with the household tasks — cooking, cleaning, washing clothes — but she is the primary caregiver for my father.
My sister and I are remote caregivers, removed from the scene. Our role here is to keep our mother as comfortable and happy as she can be, under the circumstances.
An estimated 37 lakh (3.7 million) people aged over 60 in India have dementia, an umbrella term for mostly untreatable or incurable conditions that cause progressive brain deterioration. The number is set to touch 44.1 lakh by 2015. Yet awareness on dementia is abysmal and support systems minimal.
In dementia, care lasts throughout the life of the afflicted person — anything from five to 20 years, post-diagnosis. My father will need round-the-clock care at some point, which means my mother will needfull-time help. But where will we get nurses/helpers we can trust and who are also trained in dementia care?
At present, support system for dementia care is woefully inadequate, says Dr. Ratnavalli Ellajosyulla, HoD, Cognitive Neurology, Manipal Hospital, Bangalore, and Research Head, Nightingales Centre for Ageing and Alzheimers (NCAA), Bangalore. “We lack both trained personnel and resources,” she says. Because old people are not a priority here, she observes. So multinationals and government bodies may fund research into cancer or diabetes, but dementia does not get the attention it deserves.
In October 2010, the Alzheimers and Related Disorders Society of India (ARDSI) submitted the Dementia India Report 2010. Among other issues, the report stressed there must be greater support for home care and that memory clinics must be set up to aid early diagnoses so that symptoms are not dismissed as ‘signs of ageing’. “The recommendations have not moved forward,” adds Dr. Ratnavalli.
A caregiver, who wishes to remain anonymous, says she is disillusioned with the lack of action on dementia care. “Those into dementia care (running assisted facilities etc) are slowly moving into the more lucrative sector of elder care like building old age homes/facilities,” she says. The India Report says India has six residential care centres for dementia (and 10 day-care centres), but “there is no way to monitor what happens in such places or how the inmates are treated,” the caregiver points out. Furthermore, most doctors underplay the role of the caregiver. A related issue is that those running dementia care centres do not seek to train or conduct support group/volunteer group meetings, she adds.
On the other side of this story are the caregivers themselves; faceless people like my mother. These are the wives, husbands, children and siblings who continue to care tirelessly for people with dementia. One person who has tried to give them a voice is Bangalore-based Swapna Kishore, a former caregiver who runs a resource base on dementia care (http://dementia-care-notes.in/).
Swapna’s interviews show the physical, mental and emotional toll caring can take. Then there is the financial strain and the sacrifices because, often, the caregiver ends up quitting his/her job too. Plus if there is only one carer, he/she ends up isolated; family conflicts occur, relationships turn sour, problems arise within a marriage.
Which is what happened to 48-year-old Ritika*. She takes care of her father (over 80 years) in Hyderabad. Her brother and his wife live in Jammu. Ritika’s husband, who is in the army, wants her to join him but she is unable to do so. A misunderstanding meant her brother was estranged too for a while. Things were so bad financially that she had to sell her jewels to meet expenses. Now she has a job but cannot afford help. Her brother pays their father’s medical bills but expects Ritika to continue with care giving. How long can she do that, without help?
People like Ritika and my mother, need all the help and support they can get. They do the care giving so we don’t have to. But does anyone else care?
A ‘remote’ carer’s tips
Arun* lives in the U.S. His father has dementia and is with Arun’s mother in Bangalore. Arun has set up a support system for his mother, the local caregiver.
Here are his pointers for care:
Handle all the medical issues. I buy a year’s supply of medicines, and do my father’s check-ups when I visit India, every five months.
Get the person with dementia into day care.
Hire a helper; my dad has a helper with him night, morning and evening.
Talk to your family, every day. Face-to-face conversations make a big difference.
Try alternate therapies. I believe adding edible coconut oil to my father's diet is reducing the speed of his decline.
www.ardsi.org has links to ARDSI chapters across India, day care centres, residential centres
Swapna Kishore has a YouTube channel on problems faced in dementia care www.youtube.com/user/dementiacarenotes She has also set up /www.facebook.com/dementiacarenotes
http://dementiahindi.com is a hindi website