Assisted Living and Parkinson’s Disease
Mike McClernonDec 10th, 2020
Living with Chronic Illness within an Assisted Living Community
Parkinson’s disease is a neurodegenerative disorder of the central nervous system affecting movement. The initial presentation is often tremors, specifically in one hand. In the brains of Parkinson’s patients, nerve cell damage causes dopamine levels to drop. Dopamine is the neurotransmitter chemical that helps transfer messages from our brains to our muscles. For example, I first think about moving my arm, and a signal is sent using dopamine to the many nerves controlling movement in my arm, causing it to move. As Parkinson’s advances, both dopamine production and nerve cells become damaged and unable to transmit signals to the nervous system and then on to muscles.
Parkinson’s is a progressive disease. Medications can substitute dopamine for some patients for a time and slow down the progression of the symptoms, but the underlying disease process does progress. Later in the disease, slow movement (shuffling), increasing tremors, stiffness, loss of balance, loss of ability to speak, lack of control of major and minor muscle groups, and dementia can all occur.
Stages of Parkinson’s
Parkinson’s is generally thought to have five stages.
During this initial stage, the person has mild symptoms and can generally continue with their life. Tremor and other movement difficulties occur on one side of the body only. Some changes in posture and in gait occur during this period. Facial expressions become less pronounced, indicating the beginning of the loss of nerve control. This facial change is sometimes referred to as a ‘flat’ effect, one which appears to be without response or emotion.
Symptoms start getting worse in this stage. Tremors, rigidity, and other movement problems spread to the other half of the body, and walking problems become more pronounced. People no longer trust their ability to control movement of the major muscle groups involved in walking, and the shuffling typical of Parkinson’s begins. People can still live alone or with family, but the Activities of Daily Living (ADLs) progress from ‘doable with more time’ to ‘difficult to accomplish on one’s own’. Physical therapy is often helpful in this stage, particularly the therapy approaches known as “BIG” and “LOUD”.
This is the middle of the disease process. Loss of balance becomes more severe and movement slows even further. Falls increase, and speech becomes softer. ADLs become difficult to accomplish without help. It is during this period that homecare services and/or significantly increased family support is necessary.
At this point, Parkinson’s is severe and overwhelming. Movement requires a walker, minimally. The person with Parkinson’s needs help with virtually all ADLs and is unable to live alone.
This is the last stage of Parkinson’s. Stiffness and lack of motor control make standing and walking difficult to impossible. The person is often bedridden and cannot complete any Activities of Daily Living independently. The person may experience delusions, hallucinations, and Dementia. Some Parkinson’s patients develop a specific type of dementia called Lewy Body Dementia. Lewy Body creates a more unpredictable set of cognitive challenges than dementia related to Alzheimer’s disease, the most common cause of dementia. People in Stage Five require round the clock care.
How Can Assisted Living Help?
This writer’s mother had Parkinson’s, and it progressed from simple tremors to an overwhelming set of symptoms and needs. A wise person in the Assisted Living business once commented, “Don’t let this disease take the entire family”. While she was referencing Alzheimer’s at the time, the lesson holds true for neurogenerative diseases like Parkinson’s, too. In my mother’s case, Dementia became unmanageable in the home. In fact, my mother used the oven and microwave to dry clothes, endangering herself and others. In addition, her ADLs support needs became near constant, and my sister’s family had to stop many of their activities to provide near round the clock support. In the end, we decided that Memory Care, a form of Assisted Living that also helps manage Dementia, would provide her the ADL and cognitive support needed. We reluctantly, as a family, chose care in a Community. This was somewhere in Stage Three of the disease.
Assisted Living Support for Parkinson’s Patients
People in the middle of the Parkinson’s disease process typically have several years of life remaining. They value social connections, even if they cannot easily express the satisfaction they get from interaction. They do everything very slowly and require lots of hands on attention and care to accomplish even basic ADLs. Homecare can be an option for people in this stage of the disease, as can 24-hour care and companionship delivered by a family member. Homecare can be quite expensive, though, and some families just cannot care for the Parkinson’s patient at home. In other families care may be provided by family members, but at some point, family members, often elderly, may not be able to physically accomplish the care. For these and other situations, Assisted Living might be a good option. Care can be provided for all ADL’s, and mild to moderate cognitive difficulties can be managed with compassion and specialized training.
What About the Last Stages of Parkinson’s?
Assisted Living can provide a positive 2-5-year home for people with advancing Parkinson’s disease. Families can visit frequently, knowing that their loved one is safe and is having all their needs taken care of. In fact, many family members and residents of Assisted Living report that they enjoy interactions more than they did when living at home - Professional staff now manage the time consuming and increasingly challenging aspects of care for the person with Parkinson’s, and the family can focus on being a family.
Assisted Living communities, though, are not typically set up for a person who is totally bed-bound and unable to communicate. When the person with Parkinson’s becomes completely bedbound, they typically and appropriately transfer to a Long-Term Care facility – a nursing home. Families sometimes try to pick one type of Community or facility to take the resident through the rest of their lives, starting mid disease with Parkinson’s. This is a simple strategy, but for many people, it is not the best strategy. For a person still able to move around and interact, Assisted Living provides a much better Quality of Life. It is much more social, residents and staff interact more than in Nursing Homes, and the activity selection is far greater than in Nursing Homes. Assisted Living Communities, too, are much less expensive than Nursing Homes – typically Assisted Living/Memory Care costs 50% or even less of the cost of a Nursing Home. Just as we live in different types of homes at different points in our non-elderly life, planning for different types of Senior Living facilities at different points in a relatively known disease process is valid, too.
Parkinson’s is a terrible disease. I have seen it up close. And the relative predictability of Parkinson’s can make placement in different types of Senior Living communities and facilities predictable, too. Smart families investigate their options well in advance and are ready to get help, starting with family support and homecare and progressing for many to Assisted Living and LTC.
Assisted Living Locators of Long Island is ready to help you evaluate the 100+ Assisted Living communities on Long Island and in Greater NYC and 60 or so options for Memory Communities in our area. Contact us to learn more.