Mental health and neurodegenerative diseases: For caregivers

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 as you need to know what to expect, how to take care and what signs to watch out for as the patient’s illness progresses. It is important that you meet a doctor and a therapist regularly so that you can take care of yourself too.

What to look out for ​Depression, anxiety and adjustment disorders are a few common mental health issues that can affect both the patient and the caregiver. Caregivers must look out for early warning signs such as:

• Difficulty sleeping

• Difficulty eating

• Loss of interest in things one previously enjoyed

• Avoidance of social gatherings

Additionally, caregivers need to:

• Be aware of comorbidities

• Keep a check, and also make note of the patient’s mental health history as there may be chances of a relapse of symptoms or an exacerbation

• Refer the patient to a psychiatrist or a counselor

Staying informed

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. More frequent visits may be required initially, but with time as one comes to terms with the illness and life changes, the visits decrease in frequency.

Coping with mental health issues

Managing finances: As a caregiver, you'll have a number of daily duties and responsibilities to fulfill. If there isn’t a joint account in place, see how it can be talked about with the patient and brought up for discussion in a sensitive manner. You can also request to help them operate their ATM card whenever there is a need. 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.

Care and self-care: Since it is a big change, 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 the person. So, make sure you keep some time for yourself too. From time to time, go out and engage in activities you enjoy. It is also important for you to socialize and have a network of friends and family.

Seeking help: As a caregiver of a family member, you 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. Make sure you have a support system so that you won’t feel like it is only you who is doing everything.

Social interactions: Mostly, 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 - like 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, they need to take prior permission to take them out. They must also request the nurse-in-charge to get the person ready to go outdoors.

Prevention and delaying onset

Regardless of a genetic predisposition, one can delay the onset of the disease by taking better care of oneself from one's early or mid 30’s. That way, the brain’s cognitive reserve can be built upon so that the manifestation of the disease is delayed. This can be done by engaging in activities that improve brain functioning, working on cognition, taking care of physical and mental health, choosing to eat healthy meals, learning new things and engaging in healthy social interactions.

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