Parkinson's dementia: the changes, the medicines and care at home

The NHS page on the symptoms of Parkinson's describes two levels of change. The first is mild cognitive impairment: slight memory problems, and difficulty with anything that takes planning and organising. The second is dementia, which the NHS describes as more severe memory problems, changes in personality, seeing things that are not there and believing things that are not true. The Alzheimer's Society page on Parkinson's disease dementia adds trouble staying focused, trouble staying fully awake, and problems with the way the person sees things.

Parkinson's disease dementia and dementia with Lewy bodies share the same underlying changes in the brain, and the difference between them is mainly which came first. Lewy body dementia care sets out how doctors tell the two apart, and much of what it says about daily life applies here too. This page covers what is particular to somebody who has had Parkinson's for years, whose day already turns on the medication clock. The Parkinson's care guide covers the rest of the condition.

The most important row is the first one. Confusion that arrives over hours or a day or two is called delirium, and the NHS page on sudden confusion says to go to A&E or call 999 if somebody suddenly becomes confused, because some causes need treating quickly. It lists infections, with urine infections a common cause in older people, and some prescription medicines. Sudden confusion and urine infections explains how delirium differs from a worse day with dementia, and what helps while your relative recovers.

The second clue is the tablets. The NHS page on Parkinson's treatment says one group of Parkinson's medicines, dopamine agonists, can cause hallucinations and increased confusion, and that older people are more susceptible. NICE guideline NG71 says they can come with any Parkinson's treatment (recommendation 1.3.8). It tells doctors to ask about hallucinations at every review and after every change in medication (1.5.12), to look for any other condition that could have triggered them (1.5.13), and not to treat hallucinations that the person and the family find easy to live with (1.5.14).

So a calm figure in the corner is worth mentioning at the next review rather than treating as an emergency. Where the tablets are the likely cause, NICE says the dose should come down only with a Parkinson's specialist's advice (1.5.15), so nobody at home should stop or cut a tablet to see what happens. Parkinson's UK, the national Parkinson's charity, has a page on hallucinations for families.

The Alzheimer's Society says that for someone with Parkinson's dementia, antipsychotics can cause a rapid worsening of their symptoms and can be very dangerous. NICE does allow for a small number of specific antipsychotics to be used by specialists, at lower doses than usual, so this is not a reason to refuse a medicine a Parkinson's specialist has chosen. The risk is a doctor who does not know, such as an out-of-hours GP or a paramedic seeing your relative for the first time on a difficult night. Lewy body dementia care sets out the same warning in more detail.

1. 1

   Ask the GP practice to flag it on the record

   This week

   Ask for the Parkinson's, the dementia diagnosis and the warning about antipsychotic medicines to be on the GP record where a prescriber will see it.
2. 2

   Keep one sheet with the diagnosis and the dose times

   One copy by the door, one in your bag

   The diagnosis, the specialist's name, every tablet with its clock time, and a line saying antipsychotic medicines need specialist advice.
3. 3

   Say it out loud at every new contact

   Every time

   Ambulance crew, A&E, an out-of-hours GP, a ward, a dentist. "He has Parkinson's and Parkinson's dementia" takes a few seconds and does not depend on anyone finding the notes.
4. 4

   Keep the Parkinson's tablets going on time

   Especially in hospital

   NICE says these medicines should not be stopped suddenly or allowed to fail, and in hospital should be given at the right times, which may mean letting your relative take their own.
5. 5

   Ask the specialist for a plan for a bad night

   At the next review

   What should happen if the hallucinations become distressing or your relative becomes very agitated, and who to ring. Ask for it in writing.

Dementia makes the timetable more fragile, because the person who used to remember the doses may no longer be able to. NICE says Parkinson's medicines should not be withdrawn abruptly, because of the risk of a sudden loss of movement or a rare, serious reaction (NG71, recommendation 1.3.2). Medication on time, every time covers the timetable at home and on the ward, and hospital stays with dementia covers what else to take in and how to ask for what your relative needs. NICE guideline NG97 also warns that people with dementia are at higher risk of delirium in hospital.

Nights are where a family carer runs out first. Night care for Parkinson's explains turning, the toilet and a dose in the small hours, and when a sleeping night is enough. Freezing and falls covers the cues that get the feet moving and what to do if your relative is on the floor, which matters more when they cannot follow instructions to get themselves up.

A lasting power of attorney lets your relative choose who can make decisions for them later. GOV.UK says there are two kinds, one for health and welfare and one for property and financial affairs, and that the person must have mental capacity when they make it. The Mental Capacity Act 2005 judges capacity for a particular decision at the time it is made, and says a lack of capacity cannot be assumed from a condition alone. A diagnosis of dementia does not by itself mean your relative can no longer sign, and a clear morning still counts. NICE guideline NG71 says people with Parkinson's and their families should be offered information about planning ahead, including a lasting power of attorney (recommendation 1.9.2).

If your relative can no longer make the decision, the route is deputyship through the Court of Protection. A solicitor can advise on either route, as PrimeCarers does not give legal advice. Lasting power of attorney and dementia goes through both.

The person at home needs looking after too. Broken nights, and being accused by somebody you love of things you did not do, are hard to carry alone. The NHS page on carer's breaks says councils fund respite only for people they have assessed, so the carer's assessment and your relative's own care needs assessment are the way in. Respite for dementia explains how to build up to a first break in stages. Carers UK, the national charity for family carers, has advice and a helpline.

When the nights and the confusion have become too much for one person, you can search for carers near you and compare their rates, including live-in carers. Ask each one what they have seen of Parkinson's and of dementia, how they handle a hallucination, and how they keep to a medication timetable. PrimeCarers is an introductory service: we introduce families to self-employed carers, and you choose the carer and agree the care and the rate with them directly. Before a carer appears on the site we check their identity and their right to work, confirm an enhanced DBS (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and interview them online. We do not check qualifications, training or references, so what a carer says about their Parkinson's and dementia experience is their own account on their profile, for you to ask about. What dementia training a carer should have sets out what to ask. Every visit booked through PrimeCarers is insured, by the carer's own policy or by cover PrimeCarers arranges where they do not hold one.

The client contract sets the terms for changing or ending care. Notice is 48 hours for hourly care, and for live-in care it is 7 days once the carer has worked 168 hours, with 48 hours before that. A visit your family cancels is payable in full, unless the reason is an unplanned hospital stay, illness, or another reason the carer agrees to. PrimeCarers charges nothing itself to cancel, and does not set the terms between your family and the carer. Live-in care for Parkinson's explains what a live-in week looks like with this condition.