Year : 2022 | Volume
: 9 | Issue : 1 | Page : 9--12
Home-based care of persons with dementia during COVID-19 pandemic: Caregivers' experiences
Cicil R Vasanthra1, Thirumoorthy Ammapattian1, Sojan Antony1, Girish N Rao2, Krishna Muliyala Prasad3, Kanjirakattu Madom NarayananUnni Anu1, Thomas Gregor Issac3, Sivakumar Palanimuthu Thangaraju3,
1 Departments of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India
2 Epidemiology, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India
3 Psychiatry, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India
Kanjirakattu Madom NarayananUnni Anu
Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka
Prof. Thirumoorthy Ammapattian
Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka
Background: Dementia is a neurocognitive disorder that contributes to a high caregiver burden. This article describes caregivers' experiences in providing care at home for persons with dementia during the COVID-19 pandemic. The pandemic had brought the world to a standstill that no one alive had experienced before. Methods: Cross-sectional focus group discussion with 17 caregivers of persons living with Alzheimer's disease was conducted using video conferencing software. Results: The significant issues reported by the caregivers were changing routine, an increase in demanding behavior, an increase in the tendency of wandering behavior, increased frustration among caregivers, intolerance, and overall burden. However, some caregivers were also able to adapt to emerging situations and design a new set of daily living activities. Conclusion: Understanding caregiving experiences and guiding caregivers to build their resilience would prevent caregivers' burnout.
|How to cite this article:|
Vasanthra CR, Ammapattian T, Antony S, Rao GN, Prasad KM, Anu KN, Issac TG, Thangaraju SP. Home-based care of persons with dementia during COVID-19 pandemic: Caregivers' experiences.J Geriatr Ment Health 2022;9:9-12
|How to cite this URL:|
Vasanthra CR, Ammapattian T, Antony S, Rao GN, Prasad KM, Anu KN, Issac TG, Thangaraju SP. Home-based care of persons with dementia during COVID-19 pandemic: Caregivers' experiences. J Geriatr Ment Health [serial online] 2022 [cited 2022 Dec 2 ];9:9-12
Available from: https://www.jgmh.org/text.asp?2022/9/1/9/353160
Dementia is a progressive disease of the brain which affects attention, memory, orientation, judgment, language and problem-solving skills, communication, and activities of daily living. The global estimated prevalence of dementia is 35.6 million and is expected to double by 2030 and triple by 2050.
The most rapid growth in the elderly population occurs in China, followed by India and their South Asian and Western Pacific neighbors. Over 9.9 million new cases of dementia each year worldwide, implying one new case is diagnosed every 3.2 s. More than 4 million people in India have some form of dementia. Dementia is a severe condition that affects the elderly population considerably. Dementia affects individuals and their families not only at the biological level but also affects their psychological well-being and alters their living environment.
The systemic homeostasis and multiple comorbid conditions among older persons make them susceptible to a pandemic such as COVID-19. Especially those older persons living with dementia are at a much higher risk as they may have difficulty comprehending safety precautions and guidelines of social distancing; nor would they have the capacity to access resources and medical care. Therefore, older persons pose additional challenges to caregivers who may be worried about managing themselves and their family members in stressful times of COVID-19 disrupting their sociocultural activities.
Unlike the western model of care, In India, older people and persons with dementia are provided care predominantly by their family members and relatives. It has significantly decreased the mortality rate among the elderly in India, although they are highly vulnerable to infections. The difficulties faced by caregivers of older adults with dementia are less studied. The geriatric clinic and services team at a hospital in south India attempted to understand and describe the experiences, and significant challenges family caregivers have faced in this crisis.
A cross-sectional design was used for this feasibility assessment for the online support group program during the first COVID-19 lockdown period after obtaining ethical clearance from the institute. The directory of Bengaluru-based patients who have availed of at least one service offered by the geriatric clinic and services team at the hospital was collected. Those persons with a definitive diagnosis of Alzheimer's disease registered between January 2019 and March 2019 were contacted telephonically. Out of the 73 members contacted, 32 provided verbal consent to participate in a discussion on a virtual platform regarding the management and challenges faced by caregivers during lockdown version one. A mock session was run to familiarize the participants with the conferencing software used and ensure seamless participation in the actual meeting. Although 30 members attended the mock session, 17 participated in the meeting. The licensed version of Zoom conferencing software was used for this purpose. A discussion-based sharing session was carried out to understand the participants' concerns while caring for persons with dementia. This meeting has been held to provide support through an online group meeting, which is part of the routine activities of the geriatric clinic and services. Psychiatric social workers and psychiatrists working in the geriatric mental health field moderated the support group. The researchers developed a semistructured interview guide and validated it by mental health experts. Some of the questions were “1. Please describe how you handled the loved one with dementia during the lockdown period? 2. What are some of the new/specific challenges you have been facing regarding the day-to-day care of your loved one with dementia during the lockdown period?.” The session was conducted in English. It was audio-recorded and transcribed in English. The content coded and thematic analysis were carried out to identify three major themes and supporting quotes for presenting the participants' experiences.
The mean age of the caregivers of persons living with Alzheimer's disease who participated in this discussion was 45. About 74.2% of the caregivers were male, of which 67% were sons, and about 25.8% of the caregivers were female, predominantly daughters. A majority of 70.9% of the caregivers were married, and 87.1% were from middle or upper socioeconomic status.
The three major themes identified in the analysis are presented below.
Theme 1: Difficulty in ensuring safety measures for persons with dementia
“Most of the time, my [PwD] used to ask me, “Why I am supposed to wear a mask?”; “And what is the use of it?”, “Why we should be inside?”, “What is a lockdown?”; I am forced to keep answering these questions over and over again to make them and other family members follow the COVID-19 guidelines”– CG03
Another caregiver added, “My [PwD] refused to believe that something like a lockdown exists because he kept saying he has never experienced or heard any such incident in his lifetime. It added more to his existing suspiciousness. I am not sure what else to do”.-CG27.
Many caregivers reported taking care of the family members by following all the infection control guidelines of COVID-19 as instructed by the government and health-care agencies. They had tried to explain to the persons living with dementia about the COVID-19 scenario. They tend to forget and repeatedly ask why wearing masks, washing hands, and being inside the home. The caregivers were verbally forced to answer repeatedly. It became a burden as they were also challenged with additional responsibilities such as working from home, taking care of children at home, dealing with existing and newly arising interpersonal relationship issues, and panic and anxiety related to COVID-19.
Theme 2: Change of routine and its impact
“The only physical activity My father used to do was regular morning walks with my mother. Due to lockdown, he is unable to go outside, and it has affected his mood as well”-CG04
“My mother is uncontrollable these days as she is restricted indoors. She started demanding to go out and more problematic behaviours such as spitting, yelling bad words, and not eating food. It is too difficult for me and wife to control it”.-CG06
“My father has memory problems; he tends to go out of the house without informing; even during the COVID-19 and lockdown time, twice he tried to go away, the police helped us bring him back home. It is not safe outside; more than him getting lost, I am worried if he will get the disease; he also has sugar [diabetes], and in news and all, they are saying diabetes is a high risk for COVID-19. I am too scared. How will I manage to keep my father at home?”-CG12
The major challenge for the caregivers was the change in daily routine, activities of daily living, and an increase in behavioral problems such as demanding behaviors and wandering tendencies. Behavioral problems increased due to decreased activities outside the home, such as walking and going out.
When it comes to survival and care, these factors are more critical in the COVID-19 pandemic as they increase family members' frustration. It impacts the caregiver's burden since extra precaution needs to be taken. The decreasing capacity of the patient to learn new things and adapt things also contributes to the caregiver's burden. Another one of the major problems was the availability of health-care access and medication.
Theme 3: Management of behavior problems ‒ Few experiences
“Every morning, I used to give an oil massage to my mother under the sunlight on our balcony. My mother used to enjoy this very much. I feel the touch made a difference.” – CG31
“Since the outdoor activities are restricted, I used to engage her by encouraging walk in the hall for 10–15 min, sorting the rice, etc., It helped her engage to some extent”. –CG01
“As a precaution, I have written our address and phone number in a paper, kept it in my father's pocket, and disclosed his illness to neighbours and the police sitting near our street. We think this would help them to alert us. I feel it is not good to lock him inside the house, but due to the lockdown, I am forced to lock my father inside.”– CG16
During the support group, the caregivers discussed many other practical techniques for managing behavioral problems such as positive distraction, joint activities of the caregivers and persons with dementia, and spending free time with them. A polite verbal and nonverbal communication, a fixed home environment, engagement in familiar tasks, listening to favorite old music, and telling the old stories were reported as practical techniques to manage aggressive behavior at home.
Caregiving is one of the challenging tasks, and each of the caregivers shared their experience of burden. The current pandemic has limited caregivers' access to the support system, and they do not know how to ensure social distance and safety measures with persons with dementia. The latter is already facing challenges in activities of daily living due to progressive cognitive decline.
This observational study identified some of the major concerns of the caregivers of older adults living with dementia during the pandemic. The primary issues noticed in the group included the inability to follow a structured activity schedule which used to be an essential strategy in the management of behavioral and psychological symptoms of dementia (BPSD). The activities were often customized for the patients based on their symptoms, unmet needs, and behavioral patterns. It has been thwarted with the lockdown policy. Lighter exercises are known to calm persons with dementia and also help in reducing problematic behaviors. Restriction of their activities due to the crisis also makes older adults with dementia restless and agitated. Often such restrictions trigger abusive behaviors and anger outbursts, which need to be understood empathetically. Certain behaviors such as restlessness and wandering can increase the likelihood of infections, accidents, and abuse.
Although the caregivers expressed an increase in caregiver burden during the lockdown phase, they were also able to apply indigenous management strategies such as oil massage, which reportedly has a therapeutic and soothing effect on older adults living with dementia.
These strategies have been drawn from previous experiences of other family members, preexisting cultural beliefs, and community practices. Several studies have utilized multimodal sensory stimulation as an essential constituent of nonpharmacological modalities for managing BPSD symptoms. Oil massage has also been an essential part of complementary and alternative forms of medicine, especially in Ayurveda. It benefits patients with anxiety and mood disorders by providing sound sleep and regulating the circadian rhythm, often affecting older adults with dementia.
Provisions of walking space and accompanying the person with dementia in a walk are also adaptable strategies. It also has built-in proprioceptive stimulation and improves balance, prevents constipation, and improves systemic circulation. Obesity and metabolic syndrome can cause significant morbidity in older adults with dementia if they get COVID-19 infection. Hence, brisk walking inside the house, veranda, or terrace in a secluded area under supervision should be encouraged.
Wandering behavior is common in persons living with dementia; it is essential for the family to trace and locate older adults with dementia in such situations (Dodds, 1994). A good number of caregivers use innovative strategies such as keeping an identity card with contact addresses or phone numbers in the person's pocket, provision of metal bracelets, and lockets with their contact details engraved; embroidering address and contact in all the clothes of older adults;,, print phone number and other essential contact details on their clothes would help in identifying them and reintegrating them with family members.,, In this study also, some participants follow such strategies instead of locking up the older adult, which happens to be a common practice.
This study helped identify the various concerns of caregivers of persons with dementia during the COVID-19 pandemic. It revealed essential themes, including difficulty maintaining a daily routine, worsening BPSD symptoms, and wandering behavior. Participants themselves shared the benefits of multimodal stimulation such as massage therapy, moderate exercises, and innovative strategies to prevent wandering. The study also throws light on the resilience of the caregivers and gives an insight into potential strategies which can help family caregivers.
A recent mixed-method study with similar findings highlights difficulties during the pandemic of COVID-19 such as worsening of behavioral problems, difficulty in accessing mental health services, disruption of daily routine, and difficulty following the COVID-19 prevention protocol such as wearing a mask, washing hands, and physical distance. In addition to, lack of awareness about the pandemic and limited access to formal dementia support have contributed to the existing caregiver burden.
This study highlights the caregivers' experiences of persons living with dementia during COVID-19. The pandemic has contributed to an additional burden on caregivers. This pilot study attempts to highlight the unique needs specific to the pandemic so that clinicians can address them appropriately. Furthermore, the caregivers tend to pan into the problems of persons living with dementia, neglecting their other roles. Therefore, it becomes more crucial for mental health professionals to reiterate seeking “me time” despite continuously being present in close physical proximity. Since in-person support groups may not be feasible always, online support groups could be a viable option to provide information, support, and skills to caregivers.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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