How to Create a Parkinson’s Care Plan

Creating a care plan is essential for someone living with Parkinson’s to make sure they get the best care possible throughout the stages of their condition. Parkinson’s is a progressive disease, meaning its symptoms change and develop over time, so an adaptive and future-proof care plan can make all the difference in a person’s quality of life.

Whether you’ve recently been diagnosed with Parkinson’s or are helping a loved one get their affairs in order, this guide explains all you need to know about Parkinson’s care plans. We’ll also detail how to make one and how a professional carer can help.

What is a Parkinson’s care plan?

A care plan is a document that clearly explains and outlines the support someone living with Parkinson’s requires to manage their symptoms and improve their quality of life. Multiple people may be included in the creation of a care plan, including doctors, nurses, speech therapists and wider healthcare professionals.

A Parkinson’s care plan should outline:

• Your care needs, preferences and personal wishes
• The services you’ll need to meet those requirements
• Who will provide the services and when

Your care plan will be detailed enough to include your wishes for care at home, in hospital and at the end of life. This is because Parkinson’s is a progressive and uncertain disease, so being prepared for anything that may arise is beneficial to you and your loved ones.

Why do you need a Parkinson’s care plan?

A Parkinson’s care plan isn’t just for your knowledge – it’s also essential for your healthcare team and loved ones to make sure everyone’s on the same page when it comes to your support. The purpose of a care plan is to maintain the highest quality of consistent care across your entire team, no matter the stage of your condition or where you’re staying.

There are several reasons why you should have a Parkinson’s care plan, including:

• Personalised approach: A care plan is personalised to you, your condition and current symptoms. It’ll feature your preferences for care, religious and cultural requirements, likes and dislikes, personal history and more. This provides your care team with the necessary information to support you, not just your Parkinson’s.
• Constantly updated: Care plans are living documents, meaning they’re frequently reviewed and updated by you and your care team. Parkinson’s symptoms often change and progress, so having a record of previous and current care can be insightful for doctors and specialists while ensuring effective care at all times.
• Outlines how to deal with certain situations: A care plan not only details daily plans, but also what to do in an emergency and for specific medical issues. This lets anyone caring for you know how to deal with a challenging situation immediately, rather than wasting time figuring out your requirements and preferences.
• Can identify potential future risks: Having a comprehensive plan of the specifics surrounding your condition allows a professional to assess potential risks and make a plan of how to deal with them should they arise.

While a care plan isn’t essential, it can be incredibly helpful for your loved ones so that they can spend more time focusing on spending quality time with you rather than worrying about the care you’re receiving. A support plan ensures that everyone is on the same page when it comes to your care, letting you all relax instead of worrying about the practicalities.

What to include in your Parkinson’s care plan

There’s no one-size-fits-all approach to building a Parkinson’s care plan, as everyone’s experience is often so different. Your needs will change over time, so what starts in your plan may be changed or removed at a later date.

Generally, the following is included in an initial Parkinson’s care plan:

• Your likes and dislikes, current abilities, personality and preferences
• Religious beliefs and cultural background that may affect your care
• Your current daily routine, to keep it as similar as possible
• The time of day when you’re most energetic
• Your preferred mealtimes, along with when you like to bathe and get dressed
• Regular wake-up and bedtime, and any sleep disturbances you have as a result of your Parkinson’s
• Medical history prior to diagnosis
• Your current medications and treatment plan
• Any advice your specialist has given in regards to eating, drinking, exercising and functioning with Parkinson’s
• Behavioural symptom management
• Risk management and safety concerns

Example care plans for Parkinson’s stages

There are five stages of Parkinson’s, which are used to assess the progression of your condition and the severity of symptoms. The stage you’re currently experiencing will determine the specifics of your care plan.

Home care plan for stage one of Parkinson’s

The first stage of Parkinson’s usually involves mild symptoms that might not interfere with daily activities. Any symptoms that do appear can often be treated effectively, so you may not need much assistance from a professional care team.

The best thing you can do during this stage is seek as much support and information as possible. Talk to loved ones about organising potential care in the future and come to terms with the diagnosis at your own pace. You may also want to begin thinking about later stages and mobility aids that will be helpful in the future.

Home care plan for stage two of Parkinson’s

Stage two is when symptoms start becoming more noticeable, particularly tremors and changes in facial expressions. Muscle stiffness may make it difficult to walk and complete some daily activities, such as getting dressed or shopping. Speech difficulties can also arise.

Most people with stage two Parkinson’s can still live alone, with the progression from the previous stage taking months or even years. However, as tasks become more difficult to complete alone, your care plan may include:

• Occupational therapy: Therapy to help find alternative ways of performing tasks that have become difficult, such as eating or getting dressed. Your therapist might recommend rearranging furniture to clear walkways, gadgets for pulling clothes on and off and routine changes to avoid Parkinson’s-related fatigue interfering with more strenuous activities, like shopping or social outings.
• Dietary aids: There’s no recommended diet for people with Parkinson’s, but your doctor may advise you to avoid certain foods if you’re on medication or experiencing specific side effects. For example, too much protein can interfere with the effectiveness of levodopa, a common medication for your condition.

Home care plan for stage three of Parkinson’s

Along with your current symptoms progressing, you may also notice a loss of balance and mobility. Your movements might become slower and increase your risk of falling, making the need for home care more apparent. Daily living tasks often become more difficult and memory problems may take their toll on your emotional well-being.

Further interventions can be added to your care plan to help manage symptoms and boost quality of life, including:

• Speech and language therapy: Your therapist will develop exercises to help with clarity of speech and volume to help you continue communicating with loved ones and carers. This therapy can also help with difficulties swallowing and chewing, avoiding Parkinson’s-related weight loss (which can rapidly increase the progression of the condition).
• Physiotherapy: If you’re having difficulty walking, sitting, standing and getting in and out of bed, a physiotherapist will give you useful stretches and exercises to help strengthen your muscles and gain confidence in your mobility.

Your healthcare team will likely give you plenty of advice and exercises to manage your symptoms. A live-in carer can help you complete these exercises at home, stabilising you as required and minimising your risk of falls or injuries.

Home care plan for stage four of Parkinson’s

At this stage, mobility is likely to be the biggest concern. It can be dangerous for some people to be left alone with stage four Parkinson’s, as trouble moving around paired with confusion can increase the risk of falls. You may need assistance with getting around the house from a carer and devices like a stair lift, bed hoist and grab bars.

Most people choose to enlist the help of a professional carer at this stage. A live-in carer can help with:

• Activities of daily living, including going to the toilet, dressing and bathing
• Cooking nutritious meals and eating assistance
• Encouragement to maintain an active social life
• Companionship and emotional support for you and your loved ones

Home care plan for stage five of Parkinson’s

Stage five is the most advanced and often debilitating of Parkinson’s. You may not be able to move much and spend most of your time at home. Some people will begin experiencing challenging behaviours, such as hallucinations and delusions, making it difficult for loved ones to care for you round-the-clock. As a result, respite care may be required for family carers.

Your care plan will include extensive information on how to assist you with most tasks. It may also include palliative care and end-of-life plans. A professional carer will work closely with your healthcare team to ensure you’re comfortable and properly supported throughout this stage.

Can you create your own care plan?

A care plan is designed to be comprehensive, with as much information as possible included. The more detailed it is, the more helpful it will be for new care professionals joining your case. This means that while you can create your own plan alone, you may benefit from a professional guiding what you should include.

This doesn’t mean your opinions and wishes aren’t valid. Your input is the most important, so your carer should work closely with you to make sure you’re happy with everything in your care plan. At Country Cousins, we value our clients’ needs and wishes, ensuring they’re a pivotal part of their plan curation from start to finish.

How Country Cousins can help

Currently, there’s no cure for Parkinson’s, but there are several ways to manage symptoms and live well with the condition. Country Cousins will carefully match you with a carer experienced in Parkinson’s and its stages, so you’re supported every step of the way. We’ll assist you in creating your care plan and adjusting it as and when it’s needed.

Our live-in care services include:

• Assistance with showering, bathing, shaving and oral hygiene
• Symptom monitoring and management
• Assistance with continuing hobbies and social activities
• Encouragement to maintain independence
• Companionship and emotional support

Our carers can also liaise with other healthcare professionals to keep your care plan accurate and up to date. We understand how challenging a Parkinson’s diagnosis can be on you and your loved ones, so we’ll aim to strengthen your support system through emotional guidance, assistance and knowledge.

Talk to our team today

As the UK’s longest-serving introductory live-in care agency, we have been providing compassionate live-in care to those who need it since 1959 – all from the comfort of their own homes.

Give us a call today on 01293 224 706. Our experienced team is on hand to help from Monday to Friday, 8 am to 6 pm. Alternatively, contact us through our online enquiry form.