What are the psychosocial issues facing women with Parkinson’s disease?
Women, particularly in midlife, may face significant caregiving responsibilities within the family— along with occupational and other competing demands. In a small Brazilian study, women with PD, despite their possible changes in performance ability, often continued doing their usual activities including care of family and home. Men, on the other hand, seemed to be more limited in their abilities to handle the limitations that their disease placed on them as well as to handle a lack of support. This observation will need to be corroborated in other cultural contexts. “Although I realize that getting this disease is not my fault, it did compromise my roles as a mother of a young child, the daughter of an elderly parent, a wife, and a business partner”. This quote was from a participant in a qualitative study of the impact of PD on the couple relationship— and it reflects the various roles and responsibilities that women play within their family units and within their communities. It also shows that this level of responsibility has not been restructured by the diagnosis of a chronic illness like PD. It is worth noting that data suggest that women who perceive themselves as caregivers are more likely to be in poor health, have difficulty in accessing needed medical care and experience greater degrees of depression. More consideration is thus critically needed to examine the psychosocial issues facing women with Parkinson’s disease as well as to explore the potential for improving disease management. In this week’s Parkinsonsecrets.com blog our own Indu Subramanian dives into this topic.
One take home message is that women nay have a tendency to take care of others rather than themselves even if they also have PD. If you are a woman living with PD, it is important for you to advocate for yourself or alternatively to find a cheerleader in your life to advocate for you.
Are there issues that come up in self-image that are
unique to women living with PD?
Women with PD have significantly less social support, more psychological distress, and worse self-reported (but not physician-reported) disability and health related quality of life (HRQoL) at the initial PD care visits when compared to men. This scenario may result in an increased incidence of depression or may manifest in negative self-image or other potentially unhelpful views. In fact, when women are diagnosed with PD their perceptions of their own womanhood can change. How they view their own bodies and their perception of what others think of them can be very negative. This includes the impact of their physical symptomatology and the limitations that those symptoms place on their ability to take care of themselves. Women with PD can feel unattractive and may express feeling a loss of femininity resulting in a destructive self-image.
The diagnosis of PD can have a stigma for many people. Women especially can feel “less than” or some shame when receiving the diagnosis. It can manifest in depression or a negative view of their bodies. It is important to be aware of these reactions and to seek help. Joining a support group for women can help women “feel more heard” and also improve the perception of “being seen.”
Are there specific issues in interpersonal
relationships that are observed in some women
living with PD? Is there anything we can learn?
PD can affect interpersonal relationships with family and friends. Many of these issues with self- perceived burden of disease, disability and quality of life are not well captured on currently available PD rating scales. Spousal relationships change and while some become closer, many are negatively affected by physical changes, increased dependence and the the adverse effects on sexual intimacy. This, in many cases, can serve as an added stressor, sometimes leading to a complete breakdown of the marital relationship.
Given the millions of women affected worldwide with PD, and the known differences in PD’s manifestations and effects between genders, surprisingly very little has been done to better understand those differences or to tailor management to take into consideration the unique needs of women. It has been reported that women with PD have less psychosocial support and caregiving resources. Surprisingly, these issues have not been fully explored to date.
Understanding and supporting the needs of women living with PD from a psychosocial standpoint is a key unmet need. Recognizing these issues early and being proactive in seeking help and counseling can be instrumental in laying the foundation for preventing future problems.
How does caregiving factor into the equation for
women living with PD?
Across all health conditions, including PD, women are more likely to be caregivers than men— and women tend to provide more hours of care, more hands-on care and are more involved in day-to-day tasks when compared to men. Demands of caregiving tend to affect self-identity and perception in wives compared to husbands, who seem to be less impacted in these domains by their responsibilities. Since married women with disability receive fewer hours of informal caregiving compared to married men with the same level of limitations— women who are ill are more likely to require non-spousal assistance to fill in gaps of important life needs. Consequently, women with PD are twice as likely to have a paid caregiver. Furthermore, because of the increased life expectancy of women, there may be many more years where alternative caregiving may need to be arranged since women with PD may outlive their spouse. In a longitudinal, prospective observational study of PD, the odds of caregiver accompaniment at baseline visit were lower for women compared to men, and women had a faster rate to using a paid caregiver than men. A nationwide study examining long term care in PD found that women with PD are more likely to reside in a nursing home than men with PD. These factors should be considered when planning care and management of PD women.
Women living with PD should be encouraged to plan for their futures and should decide who in their lives can be recruited to help. It may for example, not be their spouse. It is important to encourage open conversations with the family about PD and to make plans for the future. Since women care for others they are often less likely to take good care of themselves. It is important to take care of yourself, get educated and become empowered— this will facilitate living “your best life” with PD.
Are there specific general health issues for women
living with PD?
There is an overall lack of robust research into lifestyle interventions for PD management and even less so when examining gender. Women with PD have higher levels of osteoporosis with lower bone mineral density and higher fracture risk when compared to matched controls— and women experience greater weight loss earlier in the disease course. Women with PD should be highly encouraged to be screened for osteopenia/osteoporosis upon diagnosis and referred to a dietitian and physiotherapy as part of a multidisciplinary team— so that appropriate interventions can be undertaken to prevent malnutrition and bone deterioration. Women with PD also have a higher incidence of pelvic floor disorders versus matched controls, supporting the screening for pelvic floor disorders and referral to physiotherapy for education around pelvic floor preservation.
If you are a woman living with PD, you should be mindful of your bone health, weight (especially if you are losing weight or are under-weight), and your pelvic floor health. If you are having issues in these areas, we encourage discussion with your primary doctor or your neurologist.
Are there specific wellness strategies for women
living with PD?
Research suggests that there are different motivators for men and women when it comes to engagement in physical activity. Women tend to be more motivated by enjoyment of the activity and social support. Women with PD might not in many cases have enough time to devote to exercise and self-care due to the higher burden of work and also family care. Considering the impact of exercise, physical and stress-relieving activities in PD, there has overall been a lack of gender focused outcomes— we need more and better studies. Multidisciplinary care should be tailored for women and should consider unique and specific psychosocial issues.
There are many lifestyle choices which can improve PD for women. For example, exercise is like medicine and social connection is vital. If you are a woman living with PD choices may be different and we should appreciate and be sensitive to the needs of women with PD. It can be important to choose activities for enjoyment as this may help you to “stick with them.” Finally, a friend or a group to drive motivation has been reported by many women with PD to be a potential “game changer.”
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
The blog artist is Jonny Acheson.