Caregiver psychological well-being can be maintained by sharing responsibilities with family members, taking adequate breaks, and performing predictable activities for the patient.
There are an estimated 57 million people with dementia worldwide, according to World Dementia Report 2018, and this figure is likely to double every 20 years. More than 60 percent of people with dementia live in developing countries.
According to a report by Dementia in India 2020, an estimated 5.3 million Indians aged over 60 years had dementia in 2020, and this number is projected to exceed 14 million by 2050.
Alzheimer’s disease is the commonest type of dementia. It starts with small difficulties such as word-find difficulties, impairment of recent memory, but slowly progresses to activities of daily living, self-care and affects the person’s cognitive, emotional, and physical well being. This may take anywhere between 5-10 years on average. Those who become diagnosed with Alzheimer’s will eventually need assistance in their daily living, especially when it progresses to higher stages. Individuals living with this illness will need a caregiver to assist them in their activities. In low and middle-income countries such as India, family plays the primary role of caregiving.
Family caregivers of people with dementia often called the “invisible second patients”, are critical to the quality of life of the care recipients. A study showed that the largest proportion of the caregivers were either spouse, followed by children and children-in-law, mostly female. The typical profile of an unpaid dementia caregiver is a middle-aged or older female child or spouse of the person with dementia. Caregivers in developing countries spend a median of 3 to 6 hours a day with the person with dementia, and 3 to 9 hours assisting with activities of daily living.
Caregivers face many obstacles as they balance caregiving with other demands, including child rearing, career, and relationships. They are at increased risk for burden, stress, depression, and a variety of other health complications. Consequences brought upon the caregiver are those of physical health and psychosocial well-being. Many caregivers report this role to be a ‘lonely experience’ as they do not receive adequate support or empathy from others. Anger issues, mood problems, reduced sleep and agitation can be major sources of stress and frustration to the caregiver.
Caregivers tend to sacrifice their leisure pursuits and hobbies, to restrict time with friends and family, and to give up or reduce employment. The financial burden brought on by a progressive illness like Alzheimer’s disease can take a huge toll on family systems. Families incur direct costs such as medical consultations, investigations, pharmaceuticals, provision of personal and nursing care, and often residential care in the later stages. However, most estimates may omit the hidden unpaid costs borne by caregivers, which are substantial. Indirect costs include loss of earnings by patients and family caregivers as they relinquish or reduce employment, hours of informal care and mortality burden.
Many families rely on the external support of day centers to create a structure to the patient’s life and get a few hours of external support. However, such quality institutions are much less than required.
The onset of COVID in 2020 disrupted most sources of external support and intensified the problems further both for patients as well as caregivers. During the peak of this pandemic, there were multiple accounts of home confinement leading to increased agitation, restlessness and wandering away from home. With the shutting down of day care centers, the external support was cut off for families who relied on it, making it challenging to keep the patients occupied meaningfully. Even after COVID has slowly settled down, it has taken time for many of the services to resume in their original capacities. A big concern has always been maintaining COVID safety measures among older patients who may not be able to comprehend the need for it due to their illness.
Caregiver support goes a long way in improving the quality of the index patient as well as easing the burden of the primary caregiver. Positive caregiver experiences can improve the quality of life of individuals living with this disease.
Support can come in the form of instrumental support such as helping with daily living needs and housework, emotional support, and informational support from both health professionals and from those who have experienced similar situations. Training caregivers to monitor problems, identify possible events that trigger disturbances, and develop more effective responses is a helpful strategy. There is a rapidly expanding array of technology-based interventions, ranging from GPS tracking devices and memory aids for patients, telephone support systems with automated messages; stress monitoring and advice; information websites and online support fora for caregivers.
Caregivers support groups are a wonderful resource.
Some practical tips for caregivers to maintain their own psychological well-being while being effective caregivers are to share the responsibility with others in the family, take adequate breaks and to perform predictable activities for the patient. Including the person with Alzheimer’s disease in the preparation and decision-making of their care is essential. Whether the person is in the early or late stage of Alzheimer’s disease, the person will eventually need round-the-clock care.
The most common triggers for behavioural disturbances in Alzheimer’s patients are the lack of structure and engaging activities. In order to reduce some of the frustrations – schedule the day in advance, keep extra time to finish a task keeping in mind that the patient may be slower than before and needs more time to do things; provide simple clear instructions in as few words as possible; involve patient in choices and activities as much as possible, reduce distractions and limit daytime napping.
The iSUPPORT manual by the WHO, www.dementiacarenotes.in and resources by the ARDSI are of great help to caregivers. This Alzheimer’s month – let’s CARE for the caregivers to better their lives and that of those individuals whom they care for.
Dr Vandana Shetty is a Consultant Psychiatrist at Nirvikalpa – Mind Body Clinic and Dr Debanjan Banerjee Consultant is a Geriatric Psychiatrist, APOLLO Multispecialty Hospitals in Kolkata