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How to care for someone with Parkinson’s

Advice for carers

Parkinson’s is a condition that leads to problems in the brain, causing people to have issues with their movement. It’s a progressive disease, which means it gets worse over time.

If you or a loved one has been diagnosed with Parkinson’s – or you’re simply curious about Parkinson’s care – keep reading to learn more about the condition, including the symptoms, what Parkinson’s dementia is and how specialist care can help.

What is Parkinson’s?

 

Caused by the loss of nerve cells in an area of the brain called the substantia nigra, Parkinson’s leads to a reduction of dopamine levels in the brain. Because dopamine is important for regulating movement, people living with Parkinson’s often develop symptoms like tremors or rigid muscles that make it hard to move around.

Parkinson’s affects around 153,000 people in the UK, according to Parkinson’s UK. Although its cause isn’t currently known, it’s thought to be due to a combination of genetic and environmental factors.

The types of Parkinsonism

Parkinsonism is an umbrella term that covers several conditions – these are the three main forms to know about: 

  • Idiopathic Parkinson’s – This is the most common form of Parkinsonism. The name means the cause is unknown.
  • Vascular Parkinsonism – Usually caused by a stroke, this affects mobility and is sometimes called ‘lower body parkinsonism’.
  • Drug-induced Parkinsonism – Most often caused by drugs treating severe mental health conditions like schizophrenia, but most people recover after stopping medication.

What are the symptoms of Parkinson’s?

People living with Parkinson’s usually develop a tremor (or shaking) in certain body parts, stiffness and slowness of movement. These symptoms appear when the brain isn’t making enough dopamine to control movements properly. But it’s a complex condition and symptoms vary from person to person.

The range of physical and psychological symptoms of Parkinson’s include:

  • Tremors, or uncontrollable shaking
  • Slow movements
  • Rigidity of muscles
  • Depression and anxiety
  • Loss of sense of smell 
  • Problems balancing
  • Problems sleeping
  • Problems with memory

Caring for someone with Parkinson’s dementia

About a third of people who are diagnosed with Parkinson’s disease go on to develop dementia, according to Dementia UK. This usually happens in the later stages as more areas of the brain are affected and is known as Parkinson’s dementia, or Lewy body dementia.

 Symptoms could include:

  • Forgetfulness
  • Slower thought processes
  • Trouble concentrating
  • Trouble making decisions, planning and reasoning
  • Trouble learning new things
  • Hallucinations or delusions
  • Changing sleeping patterns
  • Feeling depressed, anxious or a loss of interest

Read more about Lewy body dementia here.

Around half of people with Parkinson’s will experience some form of cognitive change within 10 years of diagnosis, according to Parkinson’s UK, but not all people go on to develop a serious thinking and memory problem. Just like with dementia, Parkinson’s affects everyone differently.

Parkinson’s care: What type of care do you need?

 

While there is currently no cure for Parkinson’s, symptoms can be managed through a combination of medication, physical activity and support through different therapies, such as physiotherapy, occupational therapy and speech and language therapy.

Parkinson’s care plans

Our teams at Care UK create effective person-centred care plans for each individual to ensure that we’re providing care that meets the needs and wishes of residents and their families. 

Care plans incorporate everything from medication to dietary needs and activities to personal interests.

Care homes for Parkinson’s

Some people may continue to live at home while making adaptations to their environment to make it safer. But as Parkinson's progresses, mobility problems can lead to falls or difficulty with personal care. It may become difficult to manage day-to-day life, especially if you are living on your own. 

A care home could offer a safer and more comfortable alternative. Care homes can provide specialist support for Parkinson’s symptoms, such as managing medication, personal care and physiotherapy. 

Care UK care homes offer a range of care types to suit every individual’s needs, from respite care to nursing care. 

Addressing advanced care needs

Another benefit of moving into a care home is that the team can adjust the care as the person’s symptoms progress. With specialist nursing care and palliative care teams, care homes can provide later-stage Parkinson’s care, including managing pain, cognitive decline and end of life care planning, all in a familiar environment.

Arranging respite care for someone with Parkinson’s 

 

for people with Parkinson’s can offer a change of scene and access to expert care and specialised activities, while also providing their carer with a well-earned break.

Selecting the right care home

When looking into Parkinson’s care homes, it’s important to consider if the home team has expertise in Parkinson’s care and what facilities they offer. For example, can they provide specialised support for Parkinson’s symptoms? Are facilities like the garden, cafe and hair salon accessible for people with mobility issues?

Care UK care homes offer warm and safe environments designed to support older people to live as independently as possible and make the most of each day, no matter their care needs. Many of our homes also specialise in nursing and dementia care, so our teams can continue to provide for your loved one’s needs as they progress.

Still have questions about living with Parkinson’s, or want to learn more about care home services or fees? Use our search tool to find a care home near you and get in touch with the team to discover more about the care they provide.


FAQs

Palliative care supports people with managing symptoms of a lifelong illness like Parkinson’s. It can be provided at any stage after an individual is diagnosed.


For people with Parkinson’s, palliative care can improve quality of life by supporting individuals with pain management and other physical symptoms; emotional support and counselling; and practical advice, like planning for the future and making a will.


Learn more about palliative care.
 

As Parkinson’s progresses into the later stages, people living with the condition will need more support with their personal care and with moving around, as falls may become more of an issue.


If they have developed Parkinson’s dementia, or Lewy body dementia, they may need additional support living with dementia. Our dementia help and advice hub is full of guidance from Care UK’s dementia experts for navigating a dementia diagnosis and understanding and managing symptoms.


Care home teams can also provide end of life care for people with Parkinson’s. Several Care UK care homes are accredited in the Gold Standards Framework, which means they provide the highest standard of personalised end of life care.
 

If your loved one has moved into a care home, you can continue to provide support that’s vital to their wellbeing. We help families to stay connected through visits, whether in person or on video calls. Families are welcome to join in with activities, mealtimes and outings too.


Relatives also provide important information about residents which our teams use to personalise their care. Our senior team will keep you regularly informed of the latest developments in the home, and we always welcome your feedback on how we can change and improve.
 

In the early stages, people with Parkinson’s may not need any treatment. As Parkinson’s symptoms progress, they can be managed through a mix of medication and supportive treatments, like physiotherapy and occupational therapy. 


As the condition progresses into the later stages, people may need more help with day-to-day personal care tasks and moving around or with managing Parkinson’s dementia.
 

As Parkinson’s symptoms progress, you may need support with tasks like washing, eating and changing. Residential care homes offer support with personal care 24 hours a day. 


Specialist nursing care homes can help with more advanced medical needs, while teams in dementia care homes are trained to provide the highest-quality person-centred dementia care.


Many Care UK care homes provide a range of care types to support different levels of need. You can also check with your local care home to see if they provide specialist services for Parkinson’s, such as different therapies or Parkinson’s-friendly exercises.
 

Choosing a care home can be a stressful experience for someone living with Parkinson’s, from getting your head around the different types of care home to understanding your needs and how they could change. We’ve outlined six steps of choosing a care home to help you make the best decision for your situation.


You can also download our checklist for a full list of what you’ll want to consider when choosing a care home.