Has your loved one recently been diagnosed with multiple system atrophy (MSA)? In that case, you might be skeptical about the best course of caregiving. That’s because this disease is very rare and can potentially affect only 15,000 to 50,000 Americans.
MSA gradually occurs in older adults aged 50-60 and affects their nervous system. When diagnosed, your loved one might develop problems with their physical health and speech. For instance, they might have bladder issues, slow movement, become clumsy, faint when standing up, and more. Unfortunately, researchers haven’t found a cure or cause for this disease yet.
Yes, caring for someone with MSA is surely a labor of love. The journey ahead will be daunting, challenging, and stressful. But you can offer the best care once you understand how to communicate with them and follow treatment plans.
In this blog, we will discuss everything you need to know when caring for an older adult with MSA.
How Should You Communicate With MSA Patients?
Reports suggest that MSA patients retain their cognitive functions even if their physical abilities start deteriorating. For instance, your loved one will eventually lose their speech, making it difficult for them to communicate in a social setting. Similarly, they might speak slowly and respond late with slurred words.
When that happens, it can sometimes get frustrating when you are trying hard to understand what they want to say. If treated with pity or avoided, they can develop mental health issues like depression and a feeling of isolation. Hence, you must treat them as an independent-thinking individual and follow these tips when communicating:
- Greet them with a lovely hug or handshake every morning.
- Pay attention to their needs since they have control over their thoughts.
- When talking to them, make eye contact and have face-to-face conversations.
- Plan fun activities with them, like playing board or card games, watching movies, etc.
- Show them that you are interested in talking by being curious and asking questions.
Moreover, you must make the patient feel included by asking them to watch a game with you or go through family photos together. Treat the MSA patient with dignity, respect, and love. Before interacting with them, remember to calm your mind, relax, and be focused.
Is Following the MSA Treatment Routine Important?
Since there is no cure for MSA, treatment options become your loved one’s holy grail. Regular medication and therapy can systematically improve their quality of life.
The doctor will give you a list of treatment options to keep symptoms from becoming a problem. However, this treatment option will depend on the severity of the disease and the type of symptoms. For example, doctors will prescribe medications or therapy options based on MSA symptoms like shortness of breath or incontinence.
Other than that, your loved one will need the corticosteroid fludrocortisone medication to raise their blood pressure levels. It will help their body retain the water and salt they ingest. The doctor will also prescribe medications for breathing difficulties, balance issues, and stiffness of joints.
Apart from medications, the MSA patient will need regular physical therapy to help maintain their muscle capacity. Moreover, a speech-language pathologist can assist them with speech problems.
As a caregiver, you are responsible for looking after all these things. Ensure that they take their medications on time and go to therapy regularly. You can also shift to softer foods and drink more water to ensure they do not have any issues swallowing.
To make sleeping more comfortable, you can buy them compression socks and more pillows to keep their heads raised. Ensure they get enough movement during the day to reduce blood clot formation. The patient also needs to avoid standing up too suddenly or quickly.
When Do You Need to Get Help From a Professional?
Older adults diagnosed with MSA can live without any issues for about 7 to 10 years. However, looking after them at home during the latter half can be very stressful and exhausting.
Without proper care from professionals, they can develop lung infections, blood clots, respiratory issues, etc. Once the disease progresses and you are unable to care for them anymore, you must get them to hospice care.
At these facilities, an adult-gerontology acute care nurse practitioner (AGACNP) will help take care of their treatment and daily activities. Any nurse with an offline or online AGACNP master’s program degree is eligible to look after someone diagnosed with MSA. They are specially trained to offer care throughout the trajectory of critical illnesses and rare chronic diseases.
According to the University of Indianapolis, AGACNPs combine their clinical skills and theoretical knowledge to offer specialized care to their patients. They spent eight semesters (32 months) learning everything about caregiving. Hence, these nurses are equipped to enhance patients’ comfort when they have rare, chronic, and acute diseases.
They will focus on the MSA patient’s comfort and ensure a higher quality of life. It proves that your loved one will be in good hands at hospice care when under the supervision of an AGACNP.
Summing Up
There are multiple things you need to consider when caring for a loved one with MSA. Examples include their professional care options and how you interact with them. Even though systematic treatment and care cannot cure them, it can definitely improve their daily lives. That’s why you must provide the best care possible, be it in-home or hospice care.
Of course, caring for someone with MSA is a demanding job. This disease is relentless and can have a devastating effect on the patient. Hence, caregivers are expected to give 24/7 attention to them, both emotionally and medically.