Wellness Despite Stigma
Mental illnesses can affect people with Parkinson’s disease (PD), due to changes in the brain resulting from disease progression and/or medications. Some people with PD and their carepartners may find it challenging to openly discuss cognitive decline, and may be hesitant to learn more. Understanding these disorders, and knowing how to recognize their onset, is crucial for effective self-management and caregiving.
Dementia
Parkinson’s disease dementia is a serious cognitive decline, which can cause forgetfulness, sleep disturbances, depression, hallucinations, and slow thought process. It is also associated with difficulty concentrating, problem-solving, word-finding, planning, and decision-making.
Alzheimer’s and PD dementia can share many symptoms, like memory loss, confusion, speech issues, and difficulty finishing tasks. While PD dementia is a result of Parkinson’s-related brain changes, Alzheimer’s is caused by the development of toxic substances in the brain (plaques and tangles), which interfere with vital processes.
Dementia is commonly misunderstood, and there is little public awareness of its different forms. The Alzheimer Society of Canada notes that “stigma is one of the biggest barriers for people with dementia to live fully with dignity and respect” (2019). People with dementia and PD can both lead full and happy lives, and increasing public understanding can help them do so.
The stigma surrounding cognitive decline often causes those affected to hide, deny, or ignore their symptoms. In a survey of over 1,500 Canadians, the Alzheimer Society of Canada (2017) found that roughly half of respondents would feel uncomfortable disclosing their dementia to family and friends, and 68% would be uncomfortable telling coworkers and acquaintances. Over half of respondents also admitted to using stigmatizing language, such as telling dementia-related jokes, referring to someone as “senile,” “crazy,” or “demented.”
Mental Illness
Parkinson’s can cause depression, apathy, anxiety, and behavioural disorders, as a result of symptoms, challenges in coping with the disease, and medication side effects. The stigma surrounding mental health concerns is a barrier to early diagnosis and treatment, as many may feel embarrassed about their experiences, and thus reluctant to seek help.
Early intervention for mental health challenges can be life-changing, whether or not you live with PD. According to the Mental Health Education Resource Centre of Manitoba, benefits include:
- less stressful assessment and treatment
- reduced need for hospitalization
- reduced family disruption and distress
- improved recovery and better attitudes to treatment
- reduced risk of suicide, self-harm, or harm to others
For people with PD, early mental health intervention can also be beneficial in managing the progression of other symptoms. Apathy, depression, and anxiety, for example, can decrease motivation and interest in hobbies, causing people with PD to avoid important activities like exercise and socialization.
Wellness Despite Stigma
By opening up about cognitive and mental health changes, people with Parkinson’s can greatly improve their wellbeing. Although these concerns may be difficult to disclose, people with PD and their carepartners should feel empowered to advocate for their needs, and seek help just as they may do for physical health concerns.
Parkinson’s symptoms, including fatigue, slowness, speech issues, and a lack of facial expression, can mirror the effects of dementia and declining mental health. This can make it difficult for healthcare professionals to diagnose and treat these concerns without their patient’s cooperation and candour.
One way to cope with these concerns, and avoid denial and isolation, is to practice mindfulness. This involves being present, aware, and accepting of your circumstances in any given moment. The goal of mindfulness is to feel secure, and free from defensiveness and fear, in order to observe rather than react to ourselves and our worlds. By taking this objective approach to self-assessment, you may be better equipped to relay your observations and seek help.
Sources
Alzheimer Society of Canada (2017). 2017 Awareness Survey Executive Summary. Retrieved from: https://ilivewithdementia.ca/wp-content/uploads/2018/01/2017_AWARENESS-SURVEY_EXECUTIVE_SUMMARY.pdf
Alzheimer Society of Canada (2019). Alzheimer’s Awareness Month. Retrieved from: https://alzheimer.ca/en/Home/News-and-Events/Media-centre/alzheimers-awareness-month
Mental Health Education Resource Centre of Manitoba (n.d.). Early Intervention. Retrieved from: http://www.mherc.mb.ca/page.php?id=13
This content was published in the January 2020 edition of our monthly support group newsletter, GroupLink. The content was accurate as of this publication date.