Mental health and neurodegenerative illnesses: Living with Alzheimer's, Parkinson's and dementia

Neurodegenerative illnesses such as Alzheimer’s, Parkinson’s, and dementia are much more common today than they were a few decades ago. The onset of a neurodegenerative illness is mostly age-related or can occur due to a genetic predisposition, usually after the age of 60. For some, the onset may be in the early 40s or 50s. A person diagnosed with a neurodegenerative illness can also have comorbidities (one or more additional diseases or disorders co-occurring with a primary one). Alzheimer’s, Parkinson’s, and dementia can coexist with depression, anxiety, and other mental health issues, just as with other physical health conditions such as diabetes or hypertension.

The mental health connection

Since each person reacts and copes differently, being aware of the signs and symptoms of emotional distress especially during the initial stages, is helpful. Mental health issues may be due to biological and psychosocial reasons, or a combination of both. While some people are biologically predisposed to experiencing a mental health issue; others may be more susceptible to mental health issues due to psychosocial experiences such as:

• Death of a spouse

• Abandonment by children

• Financial stress and retirement

• Loss of a home

• Death of close relatives and friends

Depression, anxiety, and adjustment disorders (an abnormal and excessive reaction to an identifiable life stressor) are a few common mental health issues that can affect the patient. While some people take a few weeks to come to terms with the illness, others take a few months. Some may even take years to accept the situation, cope, and move forward with life. Make sure you meet a psychiatrist or a counselor if you notice symptoms or sense that something is wrong.

Treatment

If the symptoms of the mental illness have caused significant impairment, and in case the symptoms persist beyond two weeks and cause functional impairment (inability to go about one’s regular activities, inability to do simple things that one was able to do before the symptoms showed up), the doctor may prescribe medication and recommend therapy. Psychological or psychosocial causes require interventions such as psychotherapy or counseling by an experienced psychologist or counselor with an emphasis on structuring one's day and helping one come to terms with the illness and its limitations.

What one needs is consistent support from family members and the primary caregiver. Also essential: educating the family and primary caregivers. These parties can often benefit from seeing a qualified, empathetic counselor.

How does counseling help?

Counseling is helpful in supporting the patient through the illness. More frequent visits may be required initially, but with time as one comes to terms with the illness and the changes in one’s life, the visits decrease in frequency. In cases like Parkinson's, an occupational therapist can make some valuable adaptations to one's living environment, allowing them to continue functioning and retain their independence.

Coming to terms with the diagnosis

Be it Alzheimer’s, Parkinson’s, or dementia, coming to terms with the diagnosis can be challenging. In some cases, the stress and uncertainty accompanying a diagnosis could trigger depression. Although one cannot know exactly what is going to happen next or how challenging the next phase will be, it helps to be prepared for what is to come. If you've been diagnosed with one of these conditions, talk to an expert. Ask them how best you can prepare yourself as the illness progresses.

Taking care, now and later

Here are a few ways you can take care of yourself:

• Care and self-care: Since the diagnosis is a big change for you, it can be exhausting. Yet, it is important for you to take care of your mental wellbeing and physical health in the best way possible, as well as allow your caregiver and family members to care for you.

• Seeking help: Remember that being diagnosed with a neurodegenerative illness does not mean it is the end of social interactions and family meetings. Your diagnosis is not something to be afraid of or something to feel stigmatized about. Talk about your illness, and seek help from neighbors, extended family and friends. Ensure you have a support system to help you through the ups and downs as the illness progresses.

• Social interactions: Be open about the diagnosis. Let others who are close to you know that it is perfectly okay for them to visit. Try, occasionally, to go outdoors with your family and friends. It may feel like a massive effort at times, but keeping the outings short can be a lot easier and enjoyable.

• Managing your finances: Talk to your trusted family members or primary caregiver about managing your finances. Make sure your account is a savings account, and clearly indicate your nominees. It might also be a good time to start thinking about making a will or a power of attorney (POA) and start the process.

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