With advances in medical science along with lifestyle changes, life expectancy has improved globally. This trend puts India among the countries ageing very rapidly. As of 2019, over 10% of the country’s total population was found to be over 60 years of age. Moreover, this proportion of older people is expected to double by 2050, implying that every 1 in 5 Indians will likely be a senior citizen.

Ageing potentially brings with it a plethora of illnesses, both degenerative and communicable. Therefore, the elderly population has greater demands for health services. One of the most disabling and distressing illnesses in this population is dementia: a degenerative disorder characterised by a gradual loss in memory and other brain functions like thinking, concentration, understanding, sense of direction and changes in behaviour.

Alzheimer’s disease: The Problem Premise

India currently has over five million individuals living with dementia; with about four million of those having Alzheimer’s Disease, the most common type of dementia. In the absence of adequate resources and organized services, the majority of the caregiving is carried out by the family, thus putting an immense social, emotional and financial burden on them. 

“Know dementia, know Alzheimer’s” is the theme for this World Alzheimer’s Month 2021. As caregivers are often silent sufferers along with those affected by this illness, let us know more about their plight and what can be done about it.

Caregiving for Alzheimer’s disease: A long path to tread

Caregiving can be both meaningful and demanding as there is a myriad of factors involved in the process, which include the nature of the relationship with the person with dementia (PwD), the severity of the symptoms and extent of dependency, life changes and restrictions, external support and the caregivers’ own perceived competence. Behaviour changes associated with the disease (depression, anxiety, agitation, sleeplessness, suspicion, etc.) can further increase the burden on the caregivers.

Caregiving for Alzheimer’s Patients during the COVID-19 pandemic

The COVID-19 pandemic has made caregiving even more challenging. Due to increased age and associated medical conditions, people with dementia are more vulnerable to COVID infection. The cognitive impairment due to the disease can make it difficult for them to understand and follow COVID self-protection protocols. The various restrictions on movement with lockdown in several places have led to isolation, loneliness and disruption of routine as well as lifestyle. Social interaction has been reduced to minimal which has led to further worsening of dementia symptoms in many. Increased stress levels may result in worsening in concentration, memory, agitation or just withdrawing into oneself. Due to travel restrictions and fear of infections, paid caregivers have been scarce thus putting additional pressure on the family caregivers. The economic burden of dementia (both direct and indirect costs) is yet another neglected concern.

Mental health of caregivers

In addition to the difficulties pertaining to caregiving, the families also have to work around the various restrictions and disruption of work, without much ‘respite’ from caring duties. This can cause a negative impact on the caregiver’s mental health making them feel lonely, tired and frustrated. Caregivers’ burnout and stress have a direct bearing on the quality of life of people who are dependent on them. 

Management tips for caregivers of Alzheimer’s disease

Caregiving would vary based on the severity of the illness. Those in the initial stages may need help with managing money, remembering appointments, tracking medication, transportation etc. The middle stage is often the longest and may bring additional concerns like the risk of wandering, and worsening functionality. It is important to accept the changes that occur as the illness progresses.

While it is difficult to take care of those with Alzheimer’s disease, measures that may ease the task are: 

• Use technology to connect with extended family & friends, and for medical check-ups. You may involve other family members in the process. 
• Try to stay calm as the PwD may not have the context of the situation, they will react to the stress level of the caregiver.
• Keep an eye out for any decline in daily activities and memory power.
• Spend quality time with Cherish quality time spent and old memories/stories/photographs.
• Stay updated to avoid misinformation and myths related to Alzheimer’s disease
• People with dementia may not be able to carry out bank transactions or make other financial decisions. Transfer of these rights can be done with the help of a lawyer and preferably a doctor. It can ensure that the PwD is getting the appropriate resources and ease some of the burdens on the caregivers. Having a testified will in place is also important to protect the PwD from abuse and fraud.
• The caregivers should take care of their own well-being. Sleep problems, sadness, concentration issues, unexplained body pain, weight loss, appetite changes and thoughts of self-harm can be early signs of depression that need prompt professional help.
• Whenever needed, feel free to seek professional help for yourself and the patient.

Caregivers play the most important role in the treatment of a PwD. It is essential to take care of one’s own health. Some days may feel particularly stressful but they must not lose hope – patience and support are vital in this journey. 

While it is easier said than done, having some ‘me-time’ every day is important and goes a long way. Caregivers should also incorporate physical exercise, meditation, and other relaxation techniques in their daily routines. They can reach out to different sources of support, both offline such as extended family, friends and dementia caregiver support groups; as well as online sources like the ARDSI, White Swan Foundation, Dementia Care Notes, WHO iSupport Manual for dementia, etc. which provide information along with inputs on caregiving.

Although Alzheimer’s disease doesn’t have a definitive ‘cure’ yet, adequate treatment (both medical and non-medical) can make a lot of difference in the lives of those affected and those caring for them. Someone affected with Alzheimer’s disease once said – “Please remember the real me, when I cannot remember you.” 

This World Alzheimer’s Month, let us take a pledge to ensure that they are able to lead a dignified life like the rest of us, beyond a day or a month…but for a lifetime.

If you need more information,

Consult Dr Debanjan Banerjee