Caring For Aphasia Patients at End-Of-Life
Aphasia is a communication disorder that impairs the ability to process language but doesn’t affect intelligence. Caring for aphasia patients at the end of life takes dedication and knowledge of the disease to help them communicate properly with their care team and family members. If you have a loved one going through end of life care in Santa Clara and elsewhere, it’s good to know their caregivers understand the effects of this disease and how best to manage it for the highest quality of life.
June is both National Aphasia Awareness Month and Effective Communications Month, which is a great time to cover this topic and provide insight. Let’s explore what aphasia is and how it’s managed through end of life care.
What is Aphasia?
This is essentially a communication disorder, leading to an inability to process language, speak correctly if at all, and understand others; however, intelligence is typically not impacted, says the National Aphasia Association. It results from an injury of some kind to the brain, such as from a stroke, head trauma, brain tumor, or even infection. Severe cases can make communication nearly impossible, while other mild cases can simply affect just one aspect of language use, like the ability to remember names of common objects, or how to string words into sentences, or even how to read.
However, it’s most common that many aspects of communication are impaired, with mild cases allowing for the limited exchange of information. The patient’s doctor will determine the amount of function remaining in each channel for language comprehension, assessing the possibility that treatment may enhance the use of those available channels.
There are several different types of aphasia such as:
- Primary Progressive
- Mixed Non-fluent aphasia
Those diagnosed with aphasia usually also suffer from other conditions, such as cerebral palsy, multiple sclerosis, muscular dystrophy, or Parkinson’s disease. Currently, two million people have aphasia in this country, according to the National Aphasia Association.
If your loved one has been diagnosed with aphasia and their doctor said they have less than six months to live, they can enter hospice where their aphasia symptoms can be managed. The hospice care team will develop a plan for the patient, with the goal of shifting from treatment of the disease to management of their disease. Pain and symptom management is the main goal at this juncture.
How Hospice Steps in to Help
The benefits to the patient are obvious in hospice: pain management and improvement of quality of life. But the family members and caregivers can also experience great benefit, as they are made more comfortable in nurturing their loved one’s remaining functions. This helps them adjust to their loved one’s diminished capacity at the end stages of life. Hospice steps in to provide this value for everyone involved. Just like with Alzheimer’s patients, hospice is commonly underutilized for illnesses like aphasia. Why? The two diseases are difficult to diagnose when it comes to determining an exact projected time of death. Doctors, even today, are unable to predict with any accuracy when an aphasia patient is facing only six more months left of life. Sometimes, this leads to them not recommending hospice in time, if at all.
However, those aphasia patients who are able to enter hospice in time can benefit from the compassionate care offered by nurses, therapists, aides, and social workers. Frustration goes hand in hand with aphasia, as patients know just what they want to say (remember, intelligence is not affected) but they just can’t find the way to say it. There is where hospice steps in.
For the patient, the hospice team can:
- Give the patient enough time to communicate their message or feelings.
- Offer compensatory strategies for communication.
- Help them communicate through drawings and music therapy, for example.
- Utilize memory-enhancement stories, strategies, and cards.
- Develop a rudimentary system to communicate hunger, pain, etc.
- Use speech and language therapy and get the family involved in the whole process.
For the family, the hospice team can offer strategies for the family members to help their loved one, such as:
- Switching off the TV and other sources of background noise when speaking.
- Speaking at a normal level. Hearing is not affected by aphasia.
- Make sentences short and simple, emphasizing keywords.
- Using gestures and facial expressions as well as speech.
- Giving their loved ones plenty of time to respond to their end of the conversation.
- Asking questions that only have yes or no answers.
- Congratulating them on every effort.
- Making sure their loved one is involved in all conversations rather than keeping them in the background and talking about them like they’re not there.
Overall, the hospice care team is there to maintain dignity and respect for the aphasia patient so it’s less stressful for them to communicate their needs.
Contact Pathways Home Health and Hospice
To learn more about how our caregivers and health care providers are skilled in caring for aphasia patients at end of life, contact us at 888-978-1306.