The slow but certain deterioration of cognitive functions that comes with the onset of Alzheimer’s Disease is unimaginable for most. We are rooted in a culture where it is simply assumed that a sick person can rely heavily on family or relatives and is entitled to a certain amount of help and benefits. While it might get uncomfortable getting into the details of a caregiving role, these are important aspects to consider and discuss from the very beginning. Setting up personal boundaries are extremely important in order to safeguard mental and physical health of patients and caregivers as well.
It takes time to figure out a routine that works for you on an individual level. Every case is unique, and there is no one form of care that fits all. Often it so happens that a patient is looked after by one person living with them who ends up being the sole caregiver.
Multiple responsibilities rest on caregivers
Whether you’re family or a professional caregiver, the needs of an Alzheimer’s patient can be quite demanding for both. In the course of a typical day, one would be in charge of pretty much everything related to the patient. In later stages of the deterioration, one will be required to keep up with personal hygiene including brushing and bathing. This will be in addition to assisting them with day-to-day activities as well as keeping them physically and mentally stimulated.
A caregiver will need to be ever-present and available at all hours. Many Alzheimer’s patients find it difficult to fall asleep at regular hours which makes maintaining a proper schedule necessary as it will otherwise disrupt the caregiver’s sleep schedule as well resulting in exhaustion.
With increasing age, patients are also likely to take a fall. It then becomes the caregiver’s job to ensure their safety when they walk within or outside of the house. Stepping out alone could be difficult for patients in case they lose their way back. However, the patient may see this as interference rather than help as they do not always realise that they require assistance. It is challenging to navigate this in a diplomatic manner, as going through the same frustrations on a daily basis tends to take a toll on anyone.
Accepting the patient’s diagnosis
The task of looking after all household chores as well as the patient’s needs falls on one single person in such a situation. Sooner or later, this leads to a burnout.
This is why there is a need to take into stock a person’s bandwidth for dealing with such a situation and provide them with ample resources to deal with stressors. The first step to this would be identifying markers of stress.
A loved one, who has to suddenly assume the role of a caregiver after the patient has been diagnosed with Alzheimer’s Disease, might find it difficult to accept it in the first place. Denial in such form is one of the earliest indicators. This is usually followed by difficulty accepting change. As cognitive ability declines, it is impractical to expect someone with Alzheimer’s to behave exactly the way they did before. Patients may find it difficult to verbalise thoughts or execute an action perfectly. While one may try to formulate a schedule or write things down for them, it might not always work. Adapting to this becomes a requirement at this point, but that’s better said than done.
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It’s never easy seeing someone you care for change so much so suddenly, and many caregivers find that this affects them deeply. When your loved one feels confused and disoriented, it also becomes difficult to communicate and get through to them. This can cause a lot of misunderstanding, leading to frustration and anger.
Impact on mental health
Taking care of a person around the clock can even result in isolation. The caregiver might feel it is unsafe to leave them alone or feel duty-bound to be around them at all times. This weakens their support system allowing for the stress to affect them more.
When all of these are experienced together, it snowballs into more severe issues. This can manifest as other health issues as it makes one susceptible. It is totally unfair to expect or want one person to look after everything. Constantly thinking for two does not lead to a healthy outcome. Which is why it is of utmost importance to ensure caregivers have access to help they deserve.
Need for education and counselling
This begins with education. Caregivers of Alzheimer’s patients should be taught that needing help is not a sign of failure on their part. A small reminder that they are also only human can go a long way. They should ideally be taught to accept the diagnosis in a healthy way from the very beginning. This is including an open explanation of the possible behavioural changes they might experience, along with the prognosis of the ailment.
If the family of the patient thinks that they will see improvement or expect the patient to revert back to their “normal self” soon, it is important to explain to them the need to have more realistic expectations as well as a practical understanding of the situation.
Caregiver counselling is another way to deal with daily disturbances and keep you updated about changes that can be made to better help the patient.
On a personal level, one can try to remain active and engage themselves in other activities apart from daily chores. Meditation and yoga are also known to help with maintaining stress levels. Making sure to take time out for oneself is just as essential. “You can’t pour from an empty cup” is a saying I stand by. Caregivers have to remember that looking after their own health is just as important. Keeping up with regular check ups and appointments with doctors, maintaining a proper sleep schedule, as well as eating a healthy diet in a timely manner can contribute positively to this.
Caregiving is financially stressful
Unfortunately, we must also take into account the fact that such diagnoses could be financially draining. Not everyone can afford the best healthcare for the patients or caregivers. At times, the Alzheimer’s patient becomes the priority and the caregiver may choose to not get any help to cut costs. However, financial issues will only end up adding to existing mental strain.
There is an urgent need today to figure out affordable and easily available help for caregivers. An increase in support groups and reduced cost for therapy can help greatly. Further, doctors should play an active role in stressing the importance of mental health care for caregivers as well as patients. Occupational therapy for patients can help maintain cognitive functions and delay further neurodegeneration.
It is never easy having to deal with a lifelong illness. But, a strong support system along with proper planning for the future make dealing with Alzheimer’s Disease less stressful for the patient and the family.
Resource list for Alzheimer’s care
- National Helpline for Senior Citizens toll free helpline number 14567
- Silver Innings (Mon-Fri 10am to 5pm): 9029000091/ 9987104233
- ARDSI Mumbai (Mumbai Chapter of Alzheimer’s and Related Disorders Society of India) : Ms. Vidya Shenoy, Tel. 9757095327, 8286126890, Email: firstname.lastname@example.org
- Dementia Care Notes directory of centres providing care for patients
- Alzheimer’s Association