Parkinson’s Disease & Related Dementias: The Lost Skills of Communication & Swallowing
By Pamela D. Wilson, CSA, MS, BS/BA, CG
Parkinson’s disease is a health diagnosis within the family of dementias that also includes Alzheimer’s disease, vascular dementia, Lewy Body dementia and fronto-temporal dementia. The main difference between Parkinson’s disease and the other dementias is that the disease presents first as a movement disorder and second as a cognitive disorder.
Common with all dementias, as the diagnoses advance, are difficulties with communication (speech) and swallowing. Persons diagnosed with Parkinson’s disease often speak slowly or softly. Facial muscles often become rigid so that it appears that the person has no facial expression which can be confusing for those speaking to the individual who are looking for a smile or other expression of acknowledgement. Persons diagnosed with other dementias show more immediate loss of communication skills, for example repeating sentences, forgetting words, confusing words, and an inability to speak in full sentences versus responding with single words.
Common communication challenges for persons diagnosed with Parkinson’s include words that sound slurred or are mumbled, soft speech that is difficult to hear, and clearing the throat in an attempt to speak more loudly. As frustrating as this may be for persons communicating with the individual diagnosed with Parkinson’s disease attempting to communicate with others is more frustrating for the diagnosed individual.
The diagnosed often feels that others are impatient—it takes longer for words and sentences to occur and sometimes the words don’t come easily to convey ideas or thoughts. The frustrations of being ignored, of people not wanting to listen, or of people not thinking that the individual is not able to hold a meaningful conversation are common.
Imagine being frozen inside a body that cannot initiate movement or communication; thoughts are in the brain but fail to translate to words. Imagine wanting to move your arm, leg, or other body that part refuses to initiate movement. The inner mental and emotional frustrations related to movement and communications are significant for the diagnosed.
In addition to movement and communication challenges are the challenges that arise with swallowing. These include drooling, slowness in eating, and coughing or choking on food or liquid. Sensational difficulties include the feeling that food is becoming stuck in the throat, difficulty moving food to the back of the mouth to swallow, and difficulty keeping food or liquid in the mouth resulting in drooling.
Food and mealtimes generally represent social occasions and pleasurable situations. We join together at a meal to visit and enjoy the company of others. For individuals with Parkinson’s, meal times may be embarrassing to the point that eating with others is avoided because of fear of choking, making a mess at the table, or drooling.
Speech therapy benefits both communication and swallowing skills for persons diagnosed with Parkinson’s. Special programs like, the Lee Silverman Voice Treatment (LSVT) method is proven to significantly improve aspects of Parkinson’s disease related to communication and swallowing. VitalStim® Therapy supports individuals with dysphasia, the medical term to describe difficulty swallowing. An inquiry to a physician will support conversation about the benefits of speech therapy. A written prescription is required to initiate this type of therapy; many times health insurance will support this benefit.
Depending on the progression of the disease, there may be a time when a feeding tube is considered. A feeding tube is a tube placed directly into the stomach to support nutrition.
Concerns regarding eating, appropriate nutrition, and hydration often arise with individuals diagnosed with Parkinson’s disease and the other dementias.
For many individuals, cutting foods in small bites, supplying finger foods, or 1:1 assistance at meal times is helpful. I have had clients who would willingly eat an entire meal although it might take 2 hours to accomplish the task. While individuals are living at home this is possible if there is a willing caregiver with unlimited time. For individuals living in communities there are often assistive dining rooms, however staff does not have the luxury of a 2 hour meal three times a day. Private caregivers may be hired to assist in these types of situations.
Absent of this 1:1 dedicated support at meal times, a feeding tube may be considered. It is important to understand the wishes of the individual prior to this stage in the disease to determine whether a feeding tube is an intervention that the individual would have wanted or if this was viewed as a tool to extend life unnecessarily.
Research indicates that feeding tubes rarely prolong survival or increase quality of life in individuals with advanced dementia or Parkinson’s. Feeding tubes do have the potential of reducing the likelihood of aspiration pneumonia that often leads to death but do not totally avoid the risk of aspiration. If you have ever choked on food you may have experienced aspiration. Aspiration is the breathing of food into the windpipe that results in choking and if breathed into the lungs can result in pneumonia.
Knowing the wishes of the individual and the goal of placing the feeding tube is important. There are some individuals who have a feeding tube who are still able to eat and swallow foods. The feeding tube serves as a back-up or a method to supply additional nutrition or hydration. The decision to place or not to place a feeding tube is an individual decision. I have seen individuals live for years with feeding tubes and others for whom it was a short term solution.
As with Parkinson’s or any dementia diagnosis, it is important to have discussions about care very early after the initial diagnosis including talking about individual wishes for care when the disease advances. Care in the home with family or outside caregiver assistance may be preferred versus living in a care community or a nursing home. The decision regarding a feeding tube or other life extending measures is important to discuss prior to the decline of cognition when an individual may not be able to discuss his or her needs. Talking early and frequently about care needs and plans has the potential to avoid family disagreement and to provide peace of mind as the disease process progresses.
Pamela D. Wilson, MS, BS/BA, CG, CSA, Certified Senior Advisor specializes in working with family and professional caregivers to navigate healthcare and aging concerns. Wilson, an expert in the field of caregiving, has personally helped thousands of family and professional caregivers since 2000 in her career as an advocate, a care navigator, and an educator. Through her company, The Care Navigator, she is an advocate and service provider in the roles of guardian, power of attorney, care manager, and transition specialist. She was producer and host of The Caring Generation®, from 2009 to 2011, an educational radio program for caregivers on 630 KHOW-AM. In addition to her work at the Care Navigator, Pamela gives back to the community by serving as chairperson of the Community Ethics Committee in Denver, Colorado.
Her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes, is available through all major bookstores as well as on PamelaDWilson.com. You can follow Pamela on YouTube, Facebook, Twitter, and Linked In.