Are you a caregiver? To be precise, caring for your ageing parents. If they have some physical problems or non-communicable diseases, it is somehow manageable.
But if you are dealing with your parents who are suffering from a cruel disease that robs them of their independence and dignity, at a stage of life when they need it most, then you must be upset. Yes, I am talking about Alzheimer’s Disease.
Alzheimer’s disease is the most common form of dementia characterised by progressive degeneration of cognitive abilities. Its symptoms range from forgetfulness in its early stages to loss of speech and immobility in its late stages. However, Alzheimer’s differs from other geriatric diseases in that its early symptoms are often confused with that of old age and its onset is often missed.
According to the Dementia India Report 2010 by the Alzheimer’s and Related Disorders Society of India (ARDSI), there were around 3.7 million Indians with dementia in 2010 with the number projected to rise to 7.6 million by 2030. General awareness about Alzheimer’s disease remains low throughout the country and even lower in rural and underdeveloped areas.
There is an urgent need to increase awareness about dementia in general, and about the early symptoms of Alzheimer’s disease in particular. Family members and primary care physicians are best placed to recognise these early symptoms and hence, a rigorous awareness campaign targeted toward them is likely to have the most effect.
Alzheimer’s disease is a progressive disorder of the brain that gradually destroys a person’s memory, ability to learn, reason, make judgements, communicate and carry out daily activities.
As the disease progresses, patients may also experience changes in their personality and display behavioural changes ranging from anxiety, agitation or suspicion and in severe cases, delusions and hallucinations
So far no definitive cure has been identified for Alzheimer’s disease, however, new treatments help in slowing down the progression of the disease to some extent. Besides pharmacological modalities, research has shown that effective care and support can improve the quality of life for individuals and their caregivers throughout the disease from diagnosis to the end of life.
As a matter of fact, the bittersweet irony is that the caregivers of Alzheimer’s patients actually suffer more than the patients. Considering the long-term complications of Alzheimer’s patients, the hidden sociological impact will in reality be born on the shoulders of caregivers of the patients. It is not a hidden fact that the caregivers of Alzheimer’s patients are equally afraid of caring for someone who has Alzheimer’s as much as they are of developing the disease themselves.
One important thing that we need to understand as a caregiver is that no two people experience Alzheimer’s disease in the same way. As such, there’s no one approach to caregiving. Your caregiving responsibilities can range from making financial decisions, and managing changes in behaviour, to helping a loved one get dressed in the morning and helping them with their meals.
Discharging your duty as a caregiver for your parents with Alzheimer’s disease is indeed a tremendous job. Still, it is a moral, social and ethical responsibility for a child to accomplish this job. In any case, you have to make sure that your loved one feels supported and is living a full life. You can also ensure that you are taking steps to preserve your own well-being.
Taking care of your parents with Alzheimer’s disease or another disease involving dementia can be very difficult, time-consuming, and stressful. However, the following are some established things that a caregiver can do to help the parent with Alzheimer’s disease while also reducing the stress that comes with caregiving substantially:
Stay Informed - Knowledge equals power. The more you know about Alzheimer’s disease or any other signs of dementia, the better you can prepare yourself to deal with problems that may arise.
Share concerns with the person - A person who has mild to moderate impairment in memory can assist in his/her own care. Memory aids and other strategies can be created by the person with dementia and the caregiver together. This is easier said than done, but you have to give it a try. You must realise that you are probably dealing with a person who if they have any cognisance at all, will be in denial.
Solve problems one at a time - A multitude of problems may occur that may seem insurmountable at the time. Work on one specific problem at a time -- you do not have to solve every problem all at once. As the saying goes Success by the inch is a cinch, by the yard it’s hard and in this case, this has never been more true.
Use your imagination - One of the keys to handling this disease is your ability to adapt. If something can’t be done one way, try another. For example, if the person only uses his or her fingers for eating, do not keep fighting; just serve as many finger foods as possible!
Establish an environment that encourages freedom and activity within limits Try to create a stable, balanced schedule for meals, medication, etc. but also encourage activities that your parent can handle such as taking a walk or visiting an old friend. Remember, the person with Alzheimer’s disease is not the only one whose needs must be considered. You as a caregiver have needs and desires that must also be met. First, try and find some time for yourself. Even though this suggestion may seem like an impossibility, find some time during the week where you can have someone else watch the patient, be it your sibling, a relative or a friend and do something for yourself.
Avoid social isolation - Keep up in contact with friends and relatives. It’s easy to get burned out when it seems like you have no one to turn to. Another way to establish contact is by talking to the doctor of your parent and seeking counselling from them. Talking with other friends and families who share many of the very same problems can be reassuring as it helps you know you are not alone in your round-the-clock struggles.
(Dr. Zubair is a Sr Geriatric Consultant)
Disclaimer: The views and opinions expressed in this article are the personal opinions of the author.
The facts, analysis, assumptions and perspective appearing in the article do not reflect the views of GK .