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Support the Caregivers of Persons with Dementia

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Our Invisible Second Patients

By Dr Neerja Singh
Caregivers play a vital role in the lives of medically compromised persons whether it be for severe or palliative cases, or for mild to moderate cases where the patient is dependent on the caregiver for certain activities of daily life. There are some crucial times where the caregiver needs others to support him/her in difficult circumstances. At times, when support is not perceived or received it leads to stressful outcomes. We mostly ignore or assume that the care providers don’t need our assistance, which may be one of the reasons of mental health disorders like depression, anxiety, social isolation, aggression and, at times, physical abuse on the person suffering disabilities.

In India, social support is a very important aspect to throw light upon assuming we have a wide social network, yet we seldom reach out to our invisible second patients. Care providers of persons with dementia go through turmoil in their lives specifically when the level of the cognitive impairment is moderate to severe with comorbid conditions like BPSD (behavioral and psychosocial disorders) and physical ailments like diabetes, cardiovascular problems and arthritis.

Progressive Dementia is an irreversible neurodegenerative disease leading to memory decline and debilitating physical and mental health. Onset of the disease starts as early as 65 years and can progress up to 90 and till demise of the PwD. There are various types of dementias like Alzheimer’s Disease (AD) most commonly known to many, others are Parkinson’s Disease, Vascular Dementia, Frontotemporal Dementia, LBD(Dementia with Lewy Bodies), Huntington’s Disease, Mixed Dementia and Creutzfeldt–Jakob Disease.

Various types of symptoms that are found in dementia that are diagnosed are memory loss, poor judgment, confusion, speech problems, both, understanding and communication, and language problems in reading and writing. Others are wandering, getting lost, trouble with daily activities like bathing, toileting and wearing clothes, as well as managing paying bills and counting and managing money. Most of the times, behaviour of the person is affected leading to poor skills and at times bad behavior like aggression and hitting the caregivers may arise out of frustration and poor pain management. It’s not only the persons suffering but the care provider (informal) and the family put together and most likely the burden is on the spouse who is either the wife or husband or the children and, on the other hand, it is the (formal) caregiver in institutions who are primarily responsible for the nursing and care of the persons with dementia (PwD).

Social support can be categorised in four types: perceived support includes emotional support, instrumental, informational and received social support.

Emotional support plays a vital role in the lives of the caregivers (informal) who are the spouses who need to vent their frustrations by seeking help and calling up their loved ones who could be their sons or daughters who don’t stay with the parents, friends or cousins and visiting their relations.

For some caregivers, the task they perform are tiring and tedious like their jobs and doing the home chores besides looking after the disabled PwD, which gives them all the reasons to get emotionally burdened. At this time they need a “shoulder to cry on”. On the other hand, the (formal) caregivers who live in institutions with the dementia persons and are volunteers or paid caregivers stay away from their family, so need to spend time with family, friends and significant others.

Such people lead a life of social isolation cut off from the social network and moreover lead a poor quality of life in the social context. Some lead a poor lifestyle and find it difficult to maintain their finances. As a result, their basic daily expenditures and procuring daily home and food items start to deplete and it creates more burden on the care provider and also on the family. In turn, this also leads to mental disturbances.

Informational social support means giving the caregivers the right information pertaining to the kind of problems like proper medical treatment be it mental or physical and may be to approach various NGOs or daycare centres and psychological clinics for recreational facilities and mental health counseling for the PwD and themselves as well as various other such institutions to discuss the problems they might be facing and how to go about resolving them and whom to approach when in need, depending on the kind of problem.

Instrumental support deals with giving aid like financial or monetary support to the care providers as and how they need. It may include family support or the government. This is most important amongst all supports for many families facing a financial crunch. They may require some respite seeking help from the government and, lastly, received support as well as belonging support where both are equally important to the care providers and how they accept the support and feel wanted, satisfied and cared for by society.

Resilience is a factor that helps the caregivers deal with adverse situations on daily basis and most of them face challenges. They would sail through tough times trying to give the best by all means to the PwD, provided given the right kind of social support.

Due to the increase in dementia cases in the country there is a demand for trained therapists, gerontologists, neuropsychologists who specialise in diagnosing the cognitive impairments. They use neuropsychological assessments beside neuroimaging that diagnoses the type of dementia. They provide certain therapies to the persons with dementia for maintaining their cognitive functions, pain management. Here non–medical as well as counselors help the caregivers manage their mental health. It also helps psychiatrists who deal with medications for the treatment of behavioral disorders for the persons with dementia as well as neurologists who also prescribe medication for management of the disease, dealing effectively with managing and controlling the disease.

Our invisible second patients need our help and support and only when we will unite will we fight this disease and make the lives of persons with dementia and their caregivers comfortable and create abundant happiness in their lives.

“A positive mind leads to a happy body and happy individuals create a happy society and one big happy nation.”

“Mental Health Matters.”

(Dr Neerja Singh is a Consultant Psychologist & Gerontologist. She is a Guest Lecturer in Doon University Department of Social Sciences, Faculty of Psychology.)