Parkinson’s care
Parkinson’s care at home, built around the tablets
With Parkinson’s, the day depends on the medication arriving on time, on keeping moving, and on meals that are easy to manage. What helps most is a carer who understands that and comes at the same time each day, in your relative’s own home. This page maps each stage to the care that fits it.
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Not sure which stage they are at? See the stage map or call 0203 369 3624
The stage map
What changes, what a carer does, and which care fits
Neurologists use the five Hoehn and Yahr stages. Most families find it easier to think in three: early, middle and advanced. Parkinson’s moves at its own pace, over years for most people, and the help should move with it.
Early stage · Hoehn and Yahr 1 to 2
A tremor, a slower walk, and a lot of appointments
What is changing
- Tremor on one side, then both; stiffness; smaller handwriting
- Slower to start moving, a shuffle, arms that do not swing
- Tiredness, low mood and anxiety, often before the diagnosis
- Medication started, and a timetable to keep to
When it is moving on
A fall, tablets running out early or late, or trouble turning over in bed are the usual signs the next stage has started.
What a carer does at this stage
Mostly independent, so a carer is company, a driver and a second pair of hands: lifts to the Parkinson’s nurse and the physio, a walk each day to keep moving, help with the jobs that fiddly fingers make slow, and a gentle eye on whether the tablets are being taken when they should be.
Companionship and visits
£15–£25 an hour
Do this now
Get the medication times written down and set alarms for them, and ask the Parkinson’s nurse for the physio and speech therapy referrals now, while they will make the most difference.
Read
Middle stage · Hoehn and Yahr 3
Balance goes, and the day depends on the tablets
What is changing
- Freezing in doorways, and falls, especially turning or getting up
- Off periods when a dose wears off: stiff, slow, sometimes stuck
- Washing, dressing and cutting food take too long alone
- Quieter voice, smaller swallow, constipation, disturbed nights
When it is moving on
Two falls in a month, choking or coughing at meals, confusion or hallucinations, or a partner who is exhausted mean the arrangement needs to grow.
What a carer does at this stage
Daily visits timed to the tablets, so the carer is there for the off periods, not the good hours. Help with washing and dressing before the morning dose kicks in, meals cut up and easy to swallow, the walk done at the right time of day, and a routine that keeps the person moving. Nights often need cover for turning and the toilet.
Daily visits, then nights
£18–£25 an hour; nights from £130
Do this now
Ask the occupational therapist about the house: a raised toilet seat, a bed lever, a chair that is easy to stand from, nothing to trip on. A fall at this stage is often what changes everything.
Read
Advanced stage · Hoehn and Yahr 4 to 5
Needs help with everything, and someone there most of the time
What is changing
- Cannot stand or walk safely without help; a wheelchair for distance
- Swallowing difficulty; risk of chest infections; weight loss
- Dementia in some people, and hallucinations from the medication in others
- Long off periods, bed-bound stretches, pressure area and skin care
When it is moving on
Repeated chest infections, weight loss despite help, or a hospital admission are when to ask about NHS Continuing Healthcare, and when to talk with your relative about what they would want towards the end.
What a carer does at this stage
Round-the-clock care, usually a live-in carer with Parkinson’s experience and a waking-night carer if nights are disturbed. Hoisting and transfers, meals thickened to the speech therapist’s instructions, medication to the minute, turning and skin care, and someone who can tell an off period from an infection. The Parkinson’s nurse, GP and district nurses do the clinical part.
Live-in Parkinson’s care
from £1,260 a week, typically £1,340
Do this now
Ask for an NHS Continuing Healthcare assessment. At this stage the need is health as much as social care, and the NHS can fund the whole package at home.
Read
The one thing that matters most
Tablets on time, every time
Most care is forgiving of a late start, and Parkinson’s care is not. A carer who arrives when the dose is due, or before the previous one wears off, changes the whole day.
Illustrative. The stiff patch before each dose is when washing, dressing and meals go wrong, and when a visit is most useful. The Parkinson’s nurse sets the timetable.
Why the clock matters
Parkinson’s medication replaces what the brain no longer makes. A dose thirty minutes late can mean an hour stiff, stuck or unable to swallow; a missed dose can take a day to recover from. There is a national hospital campaign about getting these doses on time.
Tablets before food, or not
Some Parkinson’s tablets work badly with protein and are best taken before meals; others must go with food. The Parkinson’s nurse sets the rule. The carer keeps to it.
Never stopped suddenly
Stopping some Parkinson’s medication abruptly can be dangerous. If tablets run out, are vomited up, or the person cannot swallow, that is a same-day GP or 111 call, not a wait until Monday.
Visits timed to the doses
The useful visit is the one that arrives before the morning dose works, helps with washing and dressing through the stiff patch, and leaves when the tablets have kicked in. Ask carers to work around the timetable, not the other way round.
What carers can and cannot do with medication: can carers give medication?
What Parkinson’s care looks like
Eight things a good Parkinson’s carer does without being asked
These are ordinary tasks, done with the timing and the patience that Parkinson’s asks for.
- 01
The morning window
Up, then the tablets, and then a wait. Washing and dressing are easier once the first dose is working, which is usually thirty to sixty minutes.
- 02
Big steps, loud voice
The physio and speech exercises are done together, every day. "Big" movements and a deliberately loud voice are what the therapists work on, and they help most when practised every day.
- 03
Getting unstuck
Freezing in a doorway is not stubbornness. A carer who counts, marks the floor or plays a beat gets the feet moving without a fall.
- 04
Meals that can be swallowed
Food that is soft and moist, eaten sitting upright and without hurry, and thickened if the speech therapist has said so. Coughing at meals is always reported rather than ignored.
- 05
Constipation and fluids
Both are common, and both make the medication work less well. Fluids through the day, fibre in the diet, and a walk all help.
- 06
The off period
When a dose wears off, the carer does not rush the person. They sit with them, keep them safe until it passes, and note the time for the nurse.
- 07
Turning in the night
Rigidity makes rolling over hard. A sleeping-night carer helps once or twice, and a satin sheet and a bed lever help every night.
- 08
The notes
A note of the dose times, the off periods, any falls, and what was eaten. The Parkinson’s nurse adjusts the medication using exactly this information.
What to look for in the carer
Parkinson’s experience, named
Ask how many people with Parkinson’s they have cared for and what stage. On PrimeCarers it is on the profile.
Patient with slowness
Everything takes longer, and rushing causes falls, so the right carer is willing to wait.
Confident with transfers
In the middle and advanced stages a carer helps somebody up and, later on, uses a hoist. Ask about training.
Reliable to the minute
A carer who is twenty minutes late has missed the dose window, so good timekeeping matters here as much as anything clinical.
Works with the team
There is a Parkinson’s nurse, a physio, a speech therapist and a GP. The carer is the one who sees the person every day and tells them what is changing.
Every profile lists the conditions the carer has experience with, and you interview them for free before booking. Questions to ask at interview.
Care for a condition
If there is a diagnosis, start there
The type of care follows from what the person needs, and what they need often follows from a condition. Each of these guides explains what a carer does day to day for it, and when needs tend to change.
How it works
From “something has to change” to a carer at the door
No assessment visits, no waiting list. Some families are talking to a carer the same day.
Search your postcode
See the carers who cover it, with photos, rates, experience and reviews. Filter by hourly, live-in or overnight.
Talk to the ones you like
Message them directly, or tell us what you need and we can suggest some carers to look at. The choice is always yours.
Meet before deciding
A call, a video chat or a visit, free and before anything is booked. A lot of families have a good idea within the first ten minutes.
Book, and change it as needs change
Contract, insurance and payment run through us. You can add visits, add nights, or move to live-in care as things change, and you only pay for care that happens.
Safety first
Someone coming into their home? We take that seriously.
Letting a carer into the home of someone you love takes trust. We've built every layer of protection so that trust is earned, not assumed.
Vetting before a carer appears
Enhanced DBS, ID and right-to-work checks and an online interview before a carer appears, with renewal or rechecks depending on the accepted route. We check that a carer is caring; their skills and training are for you to check with them.
Insured and above board
Every visit is insured, contracted and paid securely online after care happens. There is no cash and no informal arrangement to manage.
A real person who knows you
Your own account manager and a UK support team who know you, your carer and your situation, not a call centre script.
Help when plans change
If your carer is unwell or away, our team will always do their best to find you vetted cover at short notice.
What clients say
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"Excellent - Lovely lady. My mother is so pleased with the work she does in helping her."
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"Julia is a highly skilled and companionate carer who is able to give so much of herself and adapt to any situation."
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"My son who he is caring for automatically welcomed Andres and can be heard laughing & having fun with Andres."
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Parkinson’s care, answered
Neurologists use the Hoehn and Yahr scale: one-sided symptoms (1), both sides (2), balance affected but still independent (3), needing help with daily life (4), and needing a wheelchair or bed-bound (5). Families find three bands more useful, early, middle and advanced, because the help changes at each. The stage map.
Gets the tablets taken on time, helps with washing and dressing in the stiff patch before a dose works, does the physio and speech exercises with the person, makes meals that can be swallowed, keeps them moving and safe from falls, helps with turning at night, and keeps notes the Parkinson’s nurse uses to adjust the medication. Eight things a good Parkinson’s carer does.
Parkinson’s tablets replace a chemical the brain no longer makes enough of. A late dose means a stiff, slow or stuck spell; a missed one can take a day to recover from, and some medicines must never be stopped suddenly. Visits are timed to the doses for that reason. Tablets on time.
Carers prompt, hand over and watch the tablets being taken, from a blister pack or a dosette box, and record it. Anything more complex, such as apomorphine pumps or adjusting doses, is for the nurse or a carer trained for it. Can carers give medication?
Early on, companionship visits at £15 to £20 an hour. Daily visits are £18 to £25 an hour, overnight care from £130 a night. Live-in care for advanced Parkinson’s starts from £1,260 a week, typically £1,340, with our fee included. The full cost guide.
Attendance Allowance (or PIP under State Pension age) is not means-tested and most people with Parkinson’s who need daily help qualify. Councils fund care after an assessment. NHS Continuing Healthcare can pay for everything, including live-in care, in advanced stages where the need is mainly health. Funding explained.
Balance goes in the middle stage and falls follow, especially turning, getting up and freezing in doorways. A carer who counts or marks the floor gets the feet moving; a physio programme done daily, and a house without trip hazards, do the rest. Building strength and home adaptations.
Some people develop memory and thinking problems in later stages, and some medication causes hallucinations. It is not certain for everyone. If it happens, the carer needs dementia experience as well as Parkinson’s experience, and the care looks like both. Dementia care.
Yes, with a live-in carer experienced in Parkinson’s, a waking-night carer if nights are disturbed, and the Parkinson’s nurse, district nurses and GP alongside. Hoisting, swallowing precautions and skin care are all done at home every day. Live-in care and complex care.
Every profile on PrimeCarers lists the conditions the carer has experience with. Search your postcode, read the profiles, and interview the ones you like for free. Ask how many people with Parkinson’s they have cared for, at what stage, and how they handle a dose that is due. How we vet carers.
Guides
Read next
The pages families with Parkinson’s in the house read most.
- Medication on time, every time
- Freezing and falls with Parkinson's
- Night care for Parkinson's
- 'Off' periods and what helps
- Swallowing and speech in Parkinson's
- Parkinson's dementia
- Deep brain stimulation aftercare
- Exercise and physio with Parkinson's
- The Parkinson’s care guide
- Can carers give medication?
- What type of exercise is best for the elderly?
- How can I build strength at 80?
- How do I stop stooping in old age?
- What happens when the elderly do not eat enough
- Symptoms of dehydration in the elderly
- Home adaptations
- Overnight care
- Live-in care
- Dementia care
- Help paying for care
- Live-in care for Parkinson's
- Mobility and falls care
A carer who knows what a good day needs
See the carers near you with Parkinson’s experience, and talk to the ones you like before deciding anything.