Care and self-care, for caregivers of patients with neurodegenerative illnesses

If you are a caregiver to someone who has been diagnosed with Alzheimer’s, Parkinson’s, or dementia, it helps to prepare yourself for the next stages. You need to know what to expect, how to take care of the patient, and what signs to watch out for as the illness progresses. At the same time, remember that you are important too. It is vital that you  prioritize self care too.

What signs should you look out for?​

Both patient and caregiver can be affected by common mental health issues such as depression, anxiety, and adjustment disorders (an abnormal and excessive reaction to an identifiable life stressor). Caregivers must watch for early warning signs such as:

• Difficulty sleeping

• Difficulty eating

• Loss of interest in things one previously enjoyed

• Avoidance of social gatherings  

Additionally, caregivers must:

• Be aware of comorbidities

• Track the patient’s mental health history, as there may be chances of a relapse or exacerbation of symptoms

• Refer the patient to a psychiatrist or a counselor, if necessary

While caring for yourself and the patient, here are a few things to keep in mind:

Stay informed. It helps you as well as the patient: As a caregiver, it helps to stay informed about the patient’s illness and meet a counselor who can support you through the different stages of the patient’s illness. Frequent visits may initially be required. But with time, as one comes to terms with the illness and accompanying life changes, visits may decrease in frequency.

Care for yourself. You are important too: Being a caregiver is a significant change, and your new role can take a toll on you. It can be very difficult as you will be required to do additional work, take care of your mental wellbeing and physical health, as well as care for your loved one. So, make sure you keep some time for yourself too. From time to time, go out and engage in activities you enjoy, socialize, and have a network of friends and family.  

Talk, and seek help when required: Caregivers must remember that the diagnosis does not mean that it is the end of social interactions and family meetings. It is not something to be afraid of or something to feel stigmatized about. It is alright to talk about it to those you trust, seek help from neighbors or extended family and friends. Ensure that you have a tight-knit, reliable support system, so that you won’t feel like it is only you who is doing everything.

Help the patient manage their finances: As a caregiver, you'll have a number of daily duties and responsibilities. If there isn’t a joint account in place, bring it up for discussion in a sensitive manner. You can also offer to help the patient operate their ATM card when needed. This will enable the family caregivers to help manage the patient’s finances when required. Talking to a counselor after the diagnosis can help them understand the need for it.

Social interactions: What should you tell family and friends? In general, people understand and cooperate when you are open with them about your family member's diagnosis. Let them know that:

• It is perfectly okay for them to visit

• If they don’t know what to talk about, tell them to talk about their day, about themselves, about a cricket match or something that really interests the person.

• In the case of Alzheimer’s or dementia, the person cannot remember much or may not have much to share. It will be helpful if they share their stories, lead the person into a conversation, rather than asking too many questions.

• They can do simple things for the person, such as taking them out to a religious place, a bookshop or even the park.

• If they feel unsure of how to interact or what to do for the person, they can ask the family members or a very close friend, since they know the person best.

• If the person is in an old-age home or a center for treatment, friends and family may need prior permission to take them out.   

Can we prevent or delay the onset of a neurodegenerative illness?

Geriatric Psychiatrist Dr Soumya Hegde says, “Taking better care of oneself, especially from the early or mid-30s, can delay the onset of the illness, regardless of one’s genetic disposition. The brain’s cognitive reserve can be built upon so that the manifestation of the illness is delayed. This can be done by engaging in activities that improve brain functioning, and working on cognition. For instance, learning a new language or a musical instrument.

Also, taking care of both physical and mental health helps to a great extent. Include these in your everyday life:

• Regular exercise

• Eating healthy meals

• Learning new things

• Meeting friends

• Having a laugh

• Engaging in healthy social interactions

With inputs from Dr Soumya Hegde, Geriatric Psychiatrist, Bangalore.