5 Tips for Caring for a Loved One with Parkinson's Disease at Home

Chris Williams
August 25, 2023

Getting a diagnosis of Parkinson’s disease, whether for yourself or a family member, can be scary. But it doesn’t mean that you or your loved one will need to move into a care home. Parkinson’s disease home care is usually very possible for a long time. You or your loved one will probably feel more comfortable remaining in familiar surroundings. 

In this article, we’ll explain what Parkinson’s is, and how you and your family can best prepare to provide or receive a Parkinson’s disease home care service.

What is Parkinson’s disease?

Parkinson’s disease is a progressive neurological condition. It affects your brain and will get worse over time. It usually affects people over 50. However, young-onset Parkinson’s can be diagnosed in people of any age.

It’s caused when nerve cells in the brain stop working, and no longer produce a chemical called dopamine. When this happens, people start to develop Parkinson’s symptoms.

The main symptoms of Parkinson’s disease are:

·  Involuntary shaking, also known as tremors

·  Stiff muscles

·  Mobility problems and slow movement

People with Parkinson’s may have other symptoms, such as memory problems or difficulties with balance and coordination. They might also feel depressed or anxious, and have trouble sleeping. Parkinson’s can affect people differently, and no two people will have the same experience.

Parkinson’s disease is not fatal. For the majority of people, it does not affect their life expectancy, although some symptoms can leave you at higher risk for falls or infections.

There’s no cure for Parkinson’s, but there are treatments available that can help you or your loved one maintain a good quality of life. These depend on your symptoms, but may include medication, physiotherapy, and, in some cases, a type of brain surgery called deep brain stimulation.  

As the disease progresses, medication may be less effective at managing your symptoms.

What do I need to know about Parkinson’s disease home care?

If your loved one has been diagnosed with Parkinson’s disease, they will probably be able to continue living at home, with some extra support in place. Whether you’re planning to care for them yourself, hire a self-employed care worker, or use a managed care service, here are five tips that might make life easier:

Home modifications 

Many people with Parkinson’s disease struggle with movement, balance and coordination. This can make life harder around the home, and lead to falls or other injuries.

You can start with making small changes to reduce the risk of falls.

In the bedroom, you might need to:

·  Move all trip hazards that your relative might encounter if they get up during the night, and use nightlights to avoid any other trip hazards.

·  Add a bed rail to make it easier to get in and out of bed, or consider an electric bed which will help them raise and lower themselves. 

In the bathroom, you might need to:

·  Add grab rails in the bath or shower, or near the toilet. Never use towel rails, radiators, soap dishes and taps as grab rails!

·  Make sure there are easily-accessible shelves, to avoid bending or reaching.

·  Use non-slip bath or shower mats.

·  Install a raised toilet seat to make sitting and standing easier.

·  Purchase a shower chair, so that there’s no need to stand in the shower.

In the kitchen, you might need to:

·  Purchase utensils with easy grips, if it’s getting difficult to use your current ones.

·  Change which cupboards you keep certain items in, so that there’s less reaching and bending.

·  Lower countertops, if your loved one needs to sit when preparing food.

In every room, you might need to:

·  Remove trip hazards such as rugs or cables.

·  Move furniture, so that there are clear paths for walking.

·  Make sure door thresholds are smooth against the floor, to avoid tripping.

·  Add grab rails.

If your relative becomes more unsteady, you may want to consider installing a stairlift. 

An occupational therapist will be able to offer advice on what would help most. Modifications will depend on your home, and your loved one’s symptoms.

Simplifying activities

Parkinson’s can make a lot of activities more challenging, both because of the physical symptoms, and also because many people with Parkinson’s experience depression, anxiety and memory problems. However, this doesn’t mean that your loved one needs to stop doing things – there are many ways to modify their activities.

Encourage your loved one to take their time with what they’re doing, and keep up with their medication to reduce symptoms where possible. An occupational therapist can offer advice about coping with day-to-day difficulties, and any adaptive products that might help.

Encourage your loved one to sit down for activities such as brushing their teeth, doing their makeup or shaving, if they’re becoming tired. Switching to electric toothbrushes and razors can also make these activities easier and safer.

Before dressing, help your loved one to stretch and consider any problem areas of stiffness. 

Some people find it easier to dress while sitting in a chair. If dressing is difficult, consider choosing clothing without buttons, such as elastic-waist trousers and clothes or shoes with Velcro fastenings.

To make eating easier, look for easy grip cutlery – as the name suggests, this is easier to hold on to. Straws might be safer than picking up a cup every time your loved one needs a drink.

Staying mobile

As Parkinson’s progresses, lots of people do lose some mobility, but you should encourage your loved one to stay as mobile as possible. 

If they have muscle stiffness or balance problems, it can be tempting to spend more time sitting down, but this is more likely to make things worse. Instead, it’s important to get some exercise.

If exercise is already part of their daily life, your loved one should continue with what they’re doing. However, if they currently do vigorous activities, they may want to discuss any limitations with their trainer or GP.

If your loved one isn’t usually active, they should start with gentle exercise. Focus on:

·   Raising the heart rate, even through gentle exercises such as walking or leg raises. Raising your heart rate is also known as aerobic activity. The NHS recommends that older adults aim for around 150 minutes of moderate activity each week.

·   Increasing flexibility, through stretching. This can easily be done while seated, if your loved one struggles to stand.

·   Improving strength, which can be done throughout the day with activities such as carrying shopping bags or gardening, or by trying some light weight lifting or yoga.

·   Improving balance, by working on your coordination through simple balances. They could try standing on one leg, or even some gentle yoga or tai chi.

The NHS recommends that people over 65 should do activities to improve balance, flexibility and strength at least twice a week. This can reduce the risk of falls.

As well as helping improve physical health, exercise can also improve your mood. As around 50 per cent of people with Parkinson’s experience depression and anxiety, this is hugely important.

Parkinson’s UK has some advice on getting active with Parkinson’s.

Coping with cognitive changes 

Many people with Parkinson’s experience mental health problems such as depression and anxiety. Sometimes this is due to the diagnosis and associated life changes, such as giving up work. Depression and anxiety can also be caused by the changes in the brain that are part of Parkinson’s.

Your GP or Parkinson’s nurse can advise about treatment for depression and anxiety. They will probably suggest that your loved one start with simple self-help methods, such as:

·  exercise, even if it’s gentle

·  sleeping enough

·  eating well

·  trying meditation

Your relative may be referred for therapy, such as cognitive behavioural therapy (CBT), which is designed to teach you new skills for dealing with negative thoughts. Alongside therapy, the GP may also prescribe antidepressants. 

If depression and anxiety are exacerbated by financial concerns due to giving up work, remember that your relative may be entitled to some benefits. Some of these aren’t means-tested, so they aren’t affected by your current income or savings. You may also be able to claim Carer’s Allowance for yourself, if you’re spending more than 35 hours a week providing support for them.

Some people with Parkinson’s also develop hallucinations, memory problems or dementia. You should discuss these with your relative’s GP, Parkinson’s nurse or specialist Parkinson's consultant. They may be able to adjust any prescribed medication, or prescribe new medication that may help. 

Mild memory problems can often be helped with some simple techniques, including visual prompts, to-do lists, alarms and pill dispensers. Occupational therapy, speech therapy and physiotherapy may also help people experiencing dementia symptoms.

If your loved one is having memory problems or has a dementia diagnosis, they might want to make decisions about their will, as well as setting up a power of attorney. This is something to discuss with a solicitor.

Looking after your own mental health

Caring for a loved one can be emotionally draining. There are a lot of positive and happy times when supporting a family member, but it can also be hard work. It may feel like your relationship has changed and that can be a difficult adjustment.

Many family carers report feeling anxious and isolated. You may be worried about money if you or your loved one has had to give up work. You may also be very tired if you need to provide care during the night.

Take time to look after your own mental health. Make sure that you’re eating and sleeping well if possible. Try to find time to keep up your own relationships and hobbies.

Talk to your loved one’s care team about support groups to meet others in the same situation. Your GP may be able to offer support if you’re feeling depressed or anxious, perhaps with medication or a referral for therapy.

If you’re feeling overwhelmed with the responsibility of providing Parkinson’s disease home care, bringing in a home care service or live-in carer, whether long-term or for a short while, might allow you to take regular breaks.

Parkinson’s disease home care

Many people with Parkinson’s disease can continue living at home for a long time with support.

You can help your loved one by modifying the home to be safer, encouraging physical activity, simplifying activities and seeking help for any cognitive issues. As the disease progresses, they will also probably need some level of personal care. Family caregivers or a professional home care provider can assist with this and their care team will put together a care plan that outlines you or your loved one's home care needs.

Frequently Asked Questions
Can Parkinson’s patients be cared for at home?

People with Parkinson’s disease can usually continue living at home with good care. You may need to make changes to their home, and as the disease progresses, many people with Parkinson’s may need some personal care.

Do you need a carer with Parkinson’s?

Many people with Parkinson’s disease will need some care and support as the condition progresses. This can be provided by a family member, care worker or live-in carer.

What modifications can I make to my home to stay at home for longer as a Parkinson’s patient?

The changes you need will depend on your symptoms. Generally, you will be looking to reduce the risk of falling. Many people with Parkinson’s install grab rails to provide extra stability, move furniture, cables and rugs to reduce trip hazards, and rearrange storage to avoid too much bending and reaching. Some people might need additional bathroom modifications or stairlifts, as their condition progresses.

How do you take care of someone with Parkinson’s disease?

You can care for a loved one with Parkinson’s by making sure their home is safe, simplifying their activities where possible, encouraging them to stay active, and supporting them through any cognitive changes. You may also need to provide some personal care, such as supporting them with washing and dressing, or bring in a care worker to do this.

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Get in touch with Tiggo Care today to see how we can help you or your loved one.

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