Caring for someone with Parkinson's
Caring for someone with Parkinson’s can be challenging and unpredictable, affecting daily life, relationships and wellbeing. The caring role often develops gradually over months or years, sometimes making it harder to realise that you are a family carer. Caring responsibilities may also change as the condition progresses.
What is Parkinson's?
Parkinson’s is a condition that affects how a person moves, feels and manages everyday life. It usually develops slowly over time.
You may hear the word Parkinsonism. This means someone has slower movement, along with symptoms such as shaking, stiff muscles or problems with balance. The most common type is Idiopathic Parkinson’s, which means the cause is not known.
Everyone experiences Parkinson’s differently. Common symptoms include: moving more slowly, shaking (often starting on one side of the body), stiff muscles, feeling very tired, and changes to handwriting. Some early signs can include a reduced sense of smell, low mood or anxiety, sleep problems, and constipation. Not everyone will have all of these symptoms.
Most people who develop Parkinson’s are over 50, but younger people can be affected too. There is no single test for Parkinson’s, which can make diagnosis difficult. Other conditions can look similar, such as essential tremor or dementia with Lewy bodies.
Specialists may ask the person you care for to walk, talk, write or draw so they can observe their movement and expressions. Medication may be tried, and how well it works can help doctors decide whether the diagnosis is Parkinson’s.
You as a family carer
Caring for someone with Parkinson’s can affect your life in many ways — physically, emotionally and socially. Many carers say they feel tired, stressed or anxious. You may worry about the person you care for, need to adjust daily routines, or feel uncertain, frustrated or overwhelmed at times.
These feelings are common. They are often linked to changes in roles and relationships, managing appointments and medication, seeing symptoms change over time, and not always knowing what to expect next.
Your caring role may include helping with everyday tasks such as dressing, eating or moving safely. You might also support with medication, attend appointments, monitor symptoms, or offer emotional support by listening, encouraging and reassuring. How much support you provide — and how you feel about caring — may change over time.
Many carers find it helpful to talk things through and access support from services that understand the impact of caring. Recognising your own needs is just as important as supporting the person you care for.
Information and support that might be useful
There are many sources of advice, information, and practical support available, from national organisations who provide specific information and advice, to local support groups and activity session aimed at people with Parkinson’s.
Local Parkinson’s support groups can help carers and people with Parkinson’s connect with others, share experiences, and take part in social or wellbeing activities. Examples of local activities include Ipswich and East Suffolk Parkinson’s groups and social activities, East Suffolk Skylarks community singing groups in Kesgrave and Snape Maltings, and Sudbury Parkinson’s Group, with the local support finder providing the most up-to-date information.
Healthcare professionals such as GPs, neurologists, and Parkinson’s specialist nurses can provide medical guidance and help coordinate care.
Parkinson’s UK offers guidance, information, and support for people with Parkinson’s and carers, including a helpline and online resources.
Parkinson’s UK has a local support finder where you can search by postcode to find nearby groups and activities across Suffolk.
Local Parkinson’s support groups can help carers and people with Parkinson’s connect with others, share experiences, and take part in social or wellbeing activities.
We offer support helping you navigate your caring role. This includes workshops to help with confidence and improvement in wellbeing, respite passes for local attractions and funded respite options. We also support Suffolk County Council with completing carer’s assessments to help identify what you need to help in your caring role.
Carers Assessments
Respite and Short Breaks
Needs Assessments
Workshops
We are here
Caring for someone with Parkinson’s can feel complex, and you do not have to manage it alone. Suffolk Family Carers provides emotional support, guidance, and information to help you in your caring role.
We can talk through your worries or questions, help you make sense of what is happening, and support you to find ways forward that feel right for you. We can also advise on support services, including respite and local resources, and help you connect with carers’ groups and activities. Help is available to make caring more manageable and to support your own wellbeing. You can contact Suffolk Family Carers by phone on 01473 835 477 or visit our website.
