How to care for end-stage Parkinson’s disease
What is Parkinson's disease?
Parkinson's disease is a progressive condition in which parts of the brain become progressively damaged over many years.
The NHS states that the main symptoms of Parkinson’s disease are involuntary shaking of particular parts of the body (tremors), slow movement and stiff and inflexible muscles. A person with Parkinson’s disease can also experience a wide range of other physical and psychological symptoms such as:
Depression
Balance problems
Loss of smell (anosmia)
Problems sleeping (insomnia)
Memory problems
Anxiety
What is end stage Parkinson's?
Some of the main symptoms of end-stage Parkinson's include:
Mobility issues
Most people may need full assistance for movement and are often confined to a wheelchair. Stiffness, severe tremors, and difficulty in maintaining balance or initiating movement are common.
Cognitive decline
Dementia or significant cognitive impairment frequently develops, affecting memory, attention, problem-solving, and even recognition of familiar people and places.
Communication decline
Late-stage Parkinson’s disease may cause speech to become soft and slurred. They may become harder to understand and individuals may struggle to form words or sentences.
Difficulty swallowing and eating
Dysphagia (difficulty swallowing) can make eating and drinking dangerous, leading to risks of choking or aspiration pneumonia. Nutritional challenges can be a challenge during this stage of Parkinson’s.
Autonomic dysfunction
Issues with the nervous system can worsen, leading to severe constipation, low blood pressure (orthostatic hypotension), and incontinence. This can also be called ‘autonomic dysfunction’.
Emotional and physciatric symptoms
Naturally, this time may be distressing and cause anxiety and depression. In some cases, hallucinations may occur which may require management from a medical professional.
What to expext with end-stage Parkinson's disease
There are many resources available to support you through end-stage Parkinson's.
Parkinson’s UK states that Parkinson’s is a progressive condition that gets worse over time. It can be difficult to predict at what speed your Parkinson’s will progress or what symptoms you may get as the condition affects everyone differently. The main symptoms include tremors, rigidity and slowness of movement, but these may develop into the symptoms listed above. Some helpful resources and charities that can support you include:
Parkinsons UK
Parkinson's Foundation
NHS
Cure Parkinson's
Marie Curie
Hospice UK
Anne Robson Trust
Parkinson's Care and Support UK
How to care for end stage Parkinson's disease
Symptom management
Carers can help you to ensure proper pain management and control of symptoms. This may involve adjustments to treatment plans to minimise any discomfort. Adjusting their diet to allow easy-to-swallow foods and making sure to keep them hydrated is crucial. You can also implement specialised equipment too such as adapted beds.
Emotional support
Spend quality time with the person to help alleviate feelings of isolation. During late-stage, mood changes are common and it can be a good idea to speak with healthcare professionals about therapies or medications to manage emotional distress. You can help their environment by reducing noise and minimising disruptions, creating a peaceful space.
Specialised and palliative care
Palliative care specialists can assist in managing symptoms and improve the person's quality of life. Taking care of a loved one full-time can be physically and emotionally draining. So, you can try care services to help with the load, such as Helping Hands' respite care. Make sure to discuss and follow the person's wishes regarding their end-of-life decisions.
Home care for Parkinson's customers with Helping Hands
At Helping Hands, we can offer superb Parkinson's care, alongside end-of-life care, so your condition is taken care of in compassionate and experienced hands.
Visiting care begins from just 30 minutes a week and our carers can come to your home at various points of the day.
Prices from £31.00
Variable prices
Call-out fee of £4.50 per visit
Live-in care offers around-the-clock support for all your needs, including condition-led care.
Starting from £1,650 per week for a single person
£1,650 per week for a couple
A fully managed service
Fully regulated by the CQC / CIW
Being regulated means:
Our carers are expertly trained and qualified to provide condition-led care, including Parkinson’s care, with a wealth of experience and compassion. We’re also regulated by the Care Quality Commission (CQC) and Care Inspectorate Wales (CIW), so we’re always on top of our game.
Guaranteed high-quality care
Peace of mind
Independent inspections
Regular development
A safe service
Regular communication