Parkinson’s is a progressive disease that affects an individual’s movement, cognition, and mental health. While there are several treatments available to manage and slow down the progression of symptoms, there is currently no cure. This means that most Parkinson’s patients will seek end of life care at some point during their journey.
Knowing you or a loved one will soon need to look for end of life care can be difficult to accept. Today, we’ll explore everything you need to know about end of life care for Parkinson’s patients to help make the next steps less daunting.
What Is Parkinson’s?
Parkinson’s affects the brain, with symptoms progressing through five stages. It can affect life expectancy and increase the risk of infections, falls and other complications. Parkinson’s occurs when the brain loses nerve cells that produce dopamine, which is a chemical that affects how the body moves.
Parkinson’s is more common in older adults, but younger people can also develop it. 1-2% of people over the age of 65 have the condition, and around 166,000 people are living with it in the UK alone.
Symptoms of Parkinson’s
The primary symptoms of Parkinson’s affect how the body moves. These include:
- Tremors
- Balance problems
- Stiff muscles
- Slowness of movement
Parkinson’s patients can also experience non-motor symptoms, which don’t affect movement. These can include:
- Sleep problems and fatigue
- Depression and anxiety
- Restless legs syndrome
- Low blood pressure
- Excessive sweating
- Memory problems and dementia
- Speech and communication difficulties
- Eating and swallowing problems
- Eye issues
- Dental problems
- Pain
- Loss of smell
While these symptoms can present themselves at any point during a Parkinson’s journey, they often become worse during the later stages.
How Can Parkinson’s Symptoms Be Managed?
While there currently isn’t a cure for Parkinson’s, many patients can continue to have a long, fulfilling life thanks to medication and therapies designed to manage symptoms.
Medicine for Parkinson’s
Several medications have been developed that increase the level of dopamine in the brain, which can reduce motor symptoms of Parkinson’s. These are the main forms of treatment and are generally very effective.
However, symptoms will begin to worsen as the medication wears off. This may occur before the next scheduled dosage time, resulting in patients experiencing varying levels of symptom severity throughout each day.
Surgery for Parkinson’s
Some Parkinson’s Patients can opt for surgery, such as Deep Brain Stimulation (DBS). This can help manage symptoms like tremors, stiffness and involuntary movements of the face, arms, legs, and torso.
DBS uses electrodes to transmit signals into the part of the brain that controls movement via a device fitted beneath the skin. This treatment is effective at managing symptoms, but it may wear off over time in the later stages of the condition.
What Is End of Life Care?
End of life care is a holistic approach that improves the quality of life for people in their last months or years of life, focusing on the prevention and relief of suffering from physical and psychological symptoms. It is not the same as palliative care, which can be delivered at any point through your Parkinson’s journey.
The key aspects of end of life care include:
- Boosted quality of life: The goal is to help individuals live comfortably and fully as long as possible.
- Symptom management: End of life care manages physical discomfort and emotional turmoil through medications and other interventions.
- Holistic support: Rather than focusing solely on Parkinson’s, end of life care addresses the patient as a whole, including psychological, social and spiritual needs.
- Patient-centred planning: Care is planned around the individual’s wishes and preferences, including where they want to receive care and who they wish to deliver it.
- Advanced care planning: End of life care can include discussions about future wishes, such as setting up a Lasting Power of Attorney or creating a living will.
When Does a Person With Parkinson’s Require End of Life Care?
Parkinson’s progresses differently for each person, even in the advanced stages. This makes it difficult to predict how quickly symptoms will get worse. Most patients find that it takes years for their symptoms to present as challenges. For others, symptoms can progress quickly.
If you’re wondering whether you or a loved one requires Parkinson’s end of life care, look for the following signs. These may suggest that a more comprehensive care plan is required:
Mobility Difficulties
End of life care may be needed if a Parkinson’s patient:
- Has an increasing number of mobility problems and falls
- Cannot move as freely due to rigidity or very slow movements
- Is bedridden for more than half of every day
Cognitive Difficulties
End of life care may be needed if a Parkinson’s patient:
- Has frequent mood and behaviour changes
- Develops dementia
- Experiences psychotic disturbances
Communication Difficulties
End of life care may be needed if a Parkinson’s patient:
- Develops a quiet voice (hypophonia)
- Has less ability to communicate with others
Mental Health Difficulties
End of life care may be needed if a Parkinson’s patient:
- Experiences mental health conditions, such as depression and anxiety, which are getting worse
- Has hallucinations or delusions
Worsening Quality of Life
End of life care may be needed if a Parkinson’s patient:
- Needs to take lots of medication to manage their symptoms
- Has symptoms that are becoming less predictable
- Is experiencing swallowing difficulties, which can lead to infection and breathing problems
- Has had multiple unplanned hospital admissions
- Gets worse each day
- Is losing weight or in a lot of pain
To learn more, read our helpful guide on when someone with Parkinson’s should go into care.
How Independent People Homecare Can Help
At Independent People Homecare, we understand the importance of complex care during the advanced stages of Parkinson’s. Our palliative live-in care service focuses on managing individual symptoms and keeping our clients comfortable at home.
Through compassionate, one-to-one live-in care, we help people with Parkinson’s and their loved ones remain as confident, independent and reassured as possible. We’ll work with you to create a personalized care plan tailored to your individual needs.
These may include:
- Symptom management: Our carers can monitor and control symptoms, such as breathlessness, nausea and fatigue.
- Medical care: We can coordinate with your healthcare team to ensure all medical needs are met and pain is effectively managed.
- Mobility assistance: Help with movement around the home to prevent falls and hospital admissions, ensuring safety.
- Personal care: Assistance with daily routines, such as bathing, dressing and grooming, to maintain dignity and comfort.
- Meal planning and preparation: Our carers can plan and cook all meals to meet dietary needs and preferences for optimal strength and well-being.
- Emotional support: Live-in care provides round-the-clock companionship to reduce feelings of fear and loneliness, providing a listening ear whenever required.
- Family support: We provide respite, education and emotional support to family members to ensure everyone feels at ease with the transitioning of symptoms.
We deliver end of life care in the comfort of home through live-in care services, focusing on helping clients remain independent for as long as possible with the utmost respect and dignity.
We Are Here to Support You
If you’re unsure about the type of care your loved one may need, our team can help. Independent People Homecare offers live-in care that is supportive, trustworthy and fully personalised. Our carers are carefully matched to each person, so your loved one receives support from someone who suits their personality and routines.
Call us today on 0800 471 4741 for a friendly chat about your situation. We will listen, answer your questions, and help you understand what level of support might be right for your family.