The trauma of being a frontline spectator to the slow and painful transformation of a parent, partner or sibling into a non-functional living entity is unimaginable. One must juggle through waves of emotional guilt, shock, grief and exhaustion almost daily. Often, one also has to double up as a caregiver to the person affected with dementia.
The plight of such family caregivers, especially the stress and burnout that they face, usually escapes the spotlight. Most of them are either partners or siblings — often themselves in the high-risk age category by virtue of being almost as old as the affected individual whom they are taking care of.
With dementia poised to triple worldwide by 2050 as per the Global Burden of Disease (GBD) forecast of the US-based Institute of Health Metrics and Evaluation (IHME), experts believe that it is time to turn the spotlight on caregiver trauma and wellness. From individual therapy to community-level counselling, training sessions and infusing technology, various alternatives are being mulled globally to tackle this situation and ensure that it makes inroads into semi-urban and rural areas from the urban areas where the bulk of the awareness and intervention programmes are currently concentrated. Alzheimer’s is one of the most common versions of dementia that affect senior citizens, incapacitating them and leaving them dependent on others for even the most basic bodily functions and activities.
“Addressing caregiver stress and burnout is as important as taking care of the person affected with dementia. It is a very demanding responsibility and specifically in the case of immediate family members who end up taking this responsibility. Initially they might not be adequately aware about dementia and how it has to be managed effectively,” says Dr Jayashree Dasgupta, neuropsychologist and co-founder of Samvedna Senior Care, a Gurugram-based organization specializing in elderly care.
Impact of dementia on caregivers
Dr Dasgupta along with her research partner Hena Faqurudheen carried out a study on the profiles of elderly people doubling as caregivers for their family members affected with dementia. As many as 194 people were included in the study after conducting screening camps at seven different locations in the National Capital Region (NCR) in India in 2019, just a couple of months before the arrival of Covid-19 and the first round of lockdowns.
“There is no cure for dementia as of now, though it has been proven that its onset and subsequent progression could be delayed or controlled through timely intervention and monitoring. Often in final-stage cases, the only option available is to ensure that the individual is properly taken care of and made comfortable at home or a proper facility either amidst their loved ones or trained caregivers,” Dr Dasgupta told Happiest Health.
The study was published in December 2020 in the Alzheimer’s and Dementia journal brought out by the Alzheimer’s Association, a US-based voluntary group, comprising of medical experts, researchers and families affected with dementia. It was revealed that a combination of various factors ranging from lack of adequate awareness to limited support systems were taking a toll on the overall mental and physical health of these individuals.
“In many countries like in the UK and US there are various institutions and centres with trained medical experts and caregivers on standby to offer specialized care and attention for senior citizens with cognitive impairments. In a country like India, because of our societal framework and norms, families often opt to take care of the individual affected with dementia and one family member doubles up as the primary caregiver,” Dr Dasgupta said.
The study revealed that at least 58 per cent out of the total caregivers screened were found with symptoms of depression and anxiety. Out of the 187 caregivers at these camps held in seven different locations, 58 per cent were women, mostly partners taking care of their loved ones suffering from various stages of dementia and related cognitive impairments. At least 67 per cent of caregivers themselves were found to be above 55 years of age that slotted them in the high-risk category for dementia and cognitive impairments.
“Being a caregiver has many dimensions to it. Most of them are partners but also parents and grandparents. They are already expected to carry out multiple roles in their family, personal and professional space and taking up something like caring for someone with dementia is a very demanding task,” Dr Dasgupta said.
Misreading symptoms and guilt tsunami
Indrani Bose is a former schoolteacher based in Mumbai, the financial metropolis in western India, and Soumya Panicker (name changed on request), a practising lawyer at the Kerala High Court in Ernakulam district in the south of the country along the coast of Arabian Sea. Neither of these women has ever met or heard about each other. But both wake up every day to the sight of their loved parents slipping in and out of the vicious grip of Alzheimer’s dementia.
Bose, 66, is the primary caregiver for her 88-year-old mother affected with Alzheimer’s dementia. Bose tries to keep herself busy with freelance translation assignments whenever she manages to find time from attending to the needs of her mother.
“Accepting the change in your loved one is the biggest challenge. We realized that mother was suffering from Alzheimer’s only in 2016. Before that there were behavioural issues, which we misunderstood. In fact, we had royal battles about them. I so regret them now — she was in no way to be blamed for the things she did or said. It was the disease (sic),” says Bose in her e-mail response to Happiest Health.
Panicker’s story mirrors Bose’s version, with the difference being that she takes care of her 95-year-old father who, unlike Bose’s mother, often slips into violent fits and must be sedated. A former Chennai Port Trust employee and a gifted amateur theatre artist and sketch artist, he stayed with his wife at their house in Mararikulam near Cherthala, about 50km from Ernakulam — where Panicker stays with her husband, a retired state government employee, and their two children. She also feels guilty for not being able to identify early signs of dementia in her father, who is now in the advanced final stage of the condition and is completely dependent on his daughter and her family.
“My father has always been healthy for his age, and he was staying with my mother for a long time after retirement. There were a lot of signs and symptoms that occurred during that period, but we all misread the situation and it was only in 2017 we sought medical advice,” she told Happiest Health over the phone. After discussing the matter with her siblings, Panicker decided to bring her parents to her home in Ernakulam. But by then her father started to hallucinate and often started to complain that there was an intruder lurking in their home waiting to attack him. He often had trouble sleeping and started to wake up in the middle of the night and start singing devotional songs at the top of his voice and banging steel vessels.
“It was so frustrating and deeply sad at the same time as my father was always healthy during his whole life and was a multitalented, soft-spoken man all his life. Apart from theatre, he also used to pen devotional songs. Now he occasionally slips into violent fits, has to be sedated, has to be fed as he forgets to chew the food and has no control over his bowels,” she said.
Doubling up as a full-time caregiver meant that Soumya had to compromise on her legal career which she considers to be the biggest collateral damage that she suffered due to her situation at home.
“That also meant my income from the legal profession suffered, but thankfully my husband had a steady job and that’s how our family managed during those days. However, lately there has been a slight improvement in my father, and he does not need to be sedated often. But he is also slightly unwell these days after his recent recovery from Covid-19 that has left him a bit shaken,” Soumya said.
Experts point out that one of the most excruciating aspects of family members caring for those with dementia is the role-reversal part where the children must take care of their parents. This phase is eerily like how a toddler requires parental supervision throughout, except during sleep time.
“Quite often dementia caregivers point out that they are unable to find time for themselves, including taking care of their health routines or going out with their friends for an occasional coffee or a shopping trip. It all builds up to unwarranted stress and a sense of resentment in many of them which has to be identified and tackled at the earliest through support networks either from outside the family or within the circle of relatives,” says Amrita Patil Pimpale, founder, Echoing Healthy Ageing, a voluntary organization focusing on senior healthcare, especially those affected with dementia, in Santa Cruz, Mumbai.
Symptoms of caregiver stress and burnout
With caregiver burnout emerging as a serious aftermath of dementia care, experts have listed down common symptoms of the condition. According to Mayo Clinic, the most common symptoms of this burnout, especially among caregivers from immediate family, could include:
- Feeling overwhelmed or constantly worried
- Fatigue
- Excess or too little sleep
- Inexplicable weight gain or loss
- Short temper
- Lack of interest in daily routine
- Feeling down and sad
- Frequent headaches and body pain
- Alcohol or drug abuse
According to Pimpale, one of the main reasons for caregiver burnout is the isolation that often comes with the responsibility as they get cut off from their daily circle of friends and activities. This could often start fomenting a sense of resentment and grief inside which will keep building up if not properly channelled out through taking up relaxing activities or an easy hobby – and, of course, seeking professional help if required.
“Often the elderly caregivers, especially in the case of partners and siblings, tend to overlook their own health. Caregivers should not neglect their own health for the sake of their loved ones who are dependent on them,” she said.
Dr Dasgupta pointed out that the situation is slightly worrisome especially in the case of partners above the age of 60 where one of them has been diagnosed with dementia and the other automatically takes up the responsibility of being a caregiver.
“In such cases often the caregiver is also in the age group that requires to be screened for cognitive impairments themselves,” she said.
Coping with caregiver stress
Bose told Happiest Health that she managed to handle the stress of taking care of her mother with the help of her siblings and her caregiving support groups. She said there were times when she felt overwhelmed with the whole responsibility and decided to look for a support group on the advice of her family physician.
“My siblings and my support group are literally my lifelines now. They keep reminding me to continue to work in my own space, keep in touch with my friends and finally continue to exercise regularly, however difficult it may seem,” she said. Bose is one of the regular participants at the dementia caregiver sessions hosted by Echoing Healthy Ageing.
Dr Dasgupta said that since homecare is popular in India there was a need to impart caregiver training to family members to ensure that they could handle the responsibility properly.
“There are various training programmes and sessions being organized to equip caregivers on a physical, emotional and mental level to function effectively as a caregiver and also take good care of themselves,” she said. Dr Dasgupta pointed out that in the post-pandemic scenario most of the support groups for caregivers moved online, which removed the geographical constraints of hosting such sessions in one city.
“Technology is also being used as a tool in dementia management. Like simple GPS trackers are often used to ensure that a caretaker can even remotely know the live location of the person affected with dementia,” she said. One common tendency among people affected with Alzheimer’s dementia is that they often tend to move out of their homes and then forget their whereabouts, making it often difficult for the family to trace them. Often caregivers are forced to stay close to the person to prevent such incidents, which often restricts their movement outside for their personal needs and hobbies.
Pimpale said that her organization regularly conducts free online support group meetings for dementia caregivers where people from across the country, especially Maharashtra, turn up to share their stories and seek guidance from the rest of the group.
Panicker, on the other hand, said that though there has been growing awareness about caregiver stress and burnout in urban areas, it was yet to percolate to Tier-II and rural areas. She said that ironically most of these places have many senior citizens confined to their homes as their children are either employed in some other part of the country or abroad.
“The fact that it is not easy to take care of someone with dementia should be evident from the fact that even in hospitals and institutions that take care of the elderly with dementia, a caregiver is not allowed to be with the patient for more than one shift at a stretch. This is to ensure that they get enough time to recuperate from the physical and mental stress. So, one could imagine how difficult it would be for someone from the family with no formal training or guidance,” she said.
