January 8, 2018
When I think about cognitive change and it’s impact on
people with Parkinson’s disease and their care partners, I think about these
two quotes.
“My place in the world is changing.” …. a person living
with PD
“This is not the same person I married.” ….a care
partner.
And while I have heard these sentiments expressed,
perhaps with different words, the message is similar from many who are living
with cognitive change.
One tricky part of dealing with cognitive changes is that
it is sometimes hard to figure out what is PD and cognitive change, what is
part of the aging process and what are behaviors related to the core
personality of the person.
And the fluctuations that are common with PD make dealing
with cognitive change tricky too, as the PWP can be clear and focused one day
and then not the next, making it hard to know what is fair to expect from the
PWP on any given day.
Regardless
of the cause of the cognitive changes and associated behaviors, coping on a
daily basis can be challenging and coping strategies are necessary.
Cognitive change can impact many areas of
life, not just remembering when to take medications or what the plan was for
the day. The PWP’s self esteem can be impacted as behaviors related to cognitive
changes may be misjudged or negatively judged by others.1 Also,
onset of cognitive change can lead to the need for difficult conversations
about driving, financial management, medication compliance or accepting help. 2 And
with challenges in communication, role changes, and care partner fatigue,
cognitive change in the PWP can impact intimacy as well.3
The emotional side effects of cognitive
change are many and can include feelings of loss and grief, shame and
embarrassment, anxiety and depression. How one copes with any of these emotions
varies greatly among people and is very dependent on you as an individual. It
is valuable to reflect on who you are (temperament, psychological resources)
and what are the supports available to you and then choose coping strategies
accordingly.
Given that emotional wellbeing affects cognitive
function, employing some non- medicinal mood managing strategies can be
impactful. Mindfulness and relaxation techniques like yoga, cognitive behavioral
therapy, counseling and exercise are valuable mood managing strategies as well
as engaging in meaningful activities including volunteering and maintaining
spiritual connections.
Participating in advance care planning can also be very
valuable in coping with the emotions associated with cognitive change as many
can feel empowered, gaining a sense of control by proactively planning for the
future. Start to have conversations early on in the condition and put
plans in place before a problem arises and in advance of the presence of
cognitive issues. Have a look at www.theconversationproject.org or www.agingwithdignity.org or www.gowish.org.
It is also easier to cope overall if you are able to
minimize or mediate some of the day to day challenges. Look at what some of the
challenges might be and then what solutions exist. Simple solutions like
sticking to routines, timing activities well and avoiding trigger situations
can make a big difference in the day in the life of a PWP.
To the PWP, be kind to yourself and live within you
abilities. To the care partner, meet your loved one where he/she is at, with
expectations that are appropriate. To the health care team, be sensitive to the
non-motor challenges and act as a resource for practical solutions and support.
Living life with a chronic condition is a journey, often
one without a roadmap. As you navigate this journey, asking for help, emotional
or practical, is not a sign of weakness, rather it is a sign of strength.
In his memoir, “Life in the balance”, Dr. Tom Graybos, a
physician diagnosed with PD, wrote about the search for hope and courage when
dealing with serious illness, including Parkinson’s Disease and cognitive
change…. 'hope that things will get better, and the courage to move forward
even if they don’t.'
If you would like to learn more about cognition and
Parkinson’s Disease, consider reading “Cognition: A mind guide to Parkinson’s
Disease” available through the Parkinson Foundation helpline at 1-800-4PD-INFO
or www.parkinson.org.
References:
1.) Angulo, Julio "Raising Awareness of PD Shame and Embarrassment" WPC Blog, October 2, 2017
1.) Angulo, Julio "Raising Awareness of PD Shame and Embarrassment" WPC Blog, October 2, 2017
2.) "I don't
know what to say: Beginning difficult conversations" Parkinson's Canada, October 25,
2017
3.) Bronner, Gila "Personal Intimacy and Sexuality in Parkinson's
Disease" WPC
Blog, September 4, 2017
_______________________________________________________________________________
Elaine Book MSW. RSW is a member of the WPC 2019 Program
Committee and has presented at the Fourth World Parkinson Congress in Portland,
Oregon and the Third World Parkinson Congress in Montreal, Canada. She is
currently the Clinical Social Worker and Centre Leader for the Parkinson's
Foundation Center of Excellence, the Pacific Parkinson's Research Centre at the
University of British Columbia in Vancouver, Canada.
Ideas and opinions expressed in this post
reflect that of the author(s) solely. They do not necessarily reflect the
opinions or positions of the World Parkinson Coalition®
https://www.worldpdcongress.org/home/2018/1/5/0ykt6poq42qwwnzcjs7xpcbcdl1tvb?platform=hootsuite
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