Caregiving for Alzheimer’s Disease: The Neglected Side of the Story
Alzheimer’s Day: Caregiving can be both meaningful & demanding, with a myriad of factors affecting this experience.
With advances in medical science and lifestyle changes, life expectancy has improved globally. While positive, this trend puts India among the countries ageing very rapidly.
As of 2019, over 10 percent of the country’s total population was found to be over 60 years of age. 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 and thus, an 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.
India currently has over five million individuals 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. Alzheimer’s disease can take a long-drawn course and the journey of the family along with the person affected with the illness can take unexpected and difficult turns at many junctures.
“Know dementia, know Alzheimer’s” is the theme for this World Alzheimer’s Month 2021. As caregivers are often the silent sufferers along with those affected with 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, with a myriad of factors affecting this experience e.g., 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. Associated changes in behaviour (depression, anxiety, agitation, sleeplessness, suspicion, etc.) can have a further burden on the caregivers.
The COVID-19 pandemic has made caregiving even more challenging. PwD are more vulnerable to COVID due to increased age and associated medical conditions.
Due to cognitive impairment, they have difficulty in understanding and following COVID protocols and self-protection. The various restrictions on movement with lockdown in several places has 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. This has been associated with increased stress levels and may manifest as 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 an additional onus on the family caregivers. The economic burden of dementia (both direct and indirect costs) is yet another neglected concern.
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’ psychological state has a direct bearing on the quality of life in people living with dementia.
Further, caregiver burnout and stress can predispose to indirect neglect and abuse among those affected.
What can those caregiving for Alzheimer’s disease do?
● Try to establish new routines suitable for the current situation. Use technology to connect with extended family & friends, and for medical check-ups. Try to involve other family members in the process.
● Stay calm – even if PwD do not have the context, they will react to the stress level of the caregiver.
● Keep an eye for any decline in daily activities and memory.
● Caregiving would vary based on the severity of 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, worsening in functionality and personal care. It is important to accept the changes that occur as the illness progresses.
● There are a lot of things people living with dementia can actually do. Be a part of their journey and keep holding hands. Ensuring their independence, autonomy and respect will not only improve their lives but also instil hope in you.
● Cherish quality time spent and old memories/stories/photographs.
● Accepting additional support makes a major difference so be open to that.
● An often overlooked but extremely crucial aspect is the legal and financial issues. PwD 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. There is limited awareness about the pensions/disability benefits that are available. These can ensure that the PwD is getting the appropriate resources and ease some of the burden on the caregivers. Having a testified will in place is also important to protect the PwD from abuse and fraud.
● Often neglected: Please take care of your own wellbeing. 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.
● Avoid misinformation and myths related to Alzheimer’s disease.
● Feel free to seek professional help when needed: both for yourself and the individual you are caring for.
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 do not lose hope – patience and support are vital in this journey. Remember that YOU are doing the best that you can.
While it is easier said than done, having some ‘me-time’ every day is important and goes a long way. Try to also incorporate physical exercise, meditation and other relaxation techniques in your daily routine.
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 lifetime.
Few valuable resources for the caregivers:
(Dr Parul Mathur is a Psychiatrist at NIMHANS in Bengaluru & Dr Debanjan Banerjee is a Consultant Old Age Psychiatrist in Kolkata)
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