Home care and care homes
In the advanced stages of Parkinson's, it's likely that you will need extra support to carry out day-to-day tasks. This may affect your choice of home.
You may decide that you would benefit from a care home or from care in your own home to help you manage your condition.
Making it easier to stay at home
You may be able to function very well at home with equipment or living aids to make your home easier to use and get around.
An occupational therapist can advise you on this and safety in and around your home. This can help prevent falls or other injuries and help you manage day-to-day activities.
They may suggest options such as rearranging furniture to make moving around your house safer, installing grab rails or equipment that can make some activities easier.
A physiotherapist can also help you with ways to prevent and manage falls.
Community alarm schemes
Whoever is caring for you, if you worry about having an accident or falling ill while you're alone at home, you may want to sign up to a community alarm scheme.
This may involve wearing a pendant with a button you press in an emergency.
If you live with someone else, they may be your carer and provide the help you need.
Even if they do, you need help with day-to-day tasks such as getting up and going to bed or bathing.
Your social services or social work department - or health and social care trust in Northern Ireland - has a responsibility to assess your needs and arrange services that can help you stay in your home.
A care manager or social worker will carry out a needs or care assessment.
This will usually take place in your home and will take into account your personal needs and your social and cultural background. If they see you need support, they will draw up a care plan.
If you have a carer, they can ask for their needs to be included in your assessment.
Alternatively, they can have an assessment in their own right.
The types of services available will change according to where you live, but might include:
- help in your home with caring tasks
- help with housework
- day care
- equipment or changes to your home
- chances for leisure and meeting people
Paying for care
A needs assessment is free of charge. Who pays for any services that social services recommend depends on your finances and whether you qualify to receive the services where you live.
This is usually decided after a care manager or social worker has assessed your finances. If you don't give this information, social services may assume you can pay for everything.
Your local authority may offer you financial support if you need it, as long as you meet their requirements. They should also be able to tell you about other financial help that's available.
If you're found to be eligible for financial support to pay for your care, this may be paid as direct payments.
Direct payments are cash payments made by the local social services, social work department or health and social care trust straight to the person who has been assessed.
The money is for you to use if you'd like to arrange and pay for your own care and support to meet any needs you've been assessed as having.
Payments could go towards respite care or caring support. But you don't have to use them if you'd prefer to have services arranged for you.
In Scotland, personal care is available without charge for everyone in the country aged 65 and over who has been assessed by the local authority as needing it. Free nursing care is available for people of any age.
Sheltered housing and care homes
As your condition progresses you may need more support to help you. Ask your local authority to review your needs and see if there are any additional services they can provide.
Even with this help at home, you may feel you can no longer manage. You may have to consider alternative options.
Speak to your local authority's housing department to find out more about any options that are available.
We've included below some of the types of housing that may be available, but this will vary depending on where you live.
Sheltered or retirement housing
This is specially designed for older people. It may appeal if you want to live independently but in a smaller home and one that's easier to manage.
'Extra care' sheltered housing offers more support – in some cases including personal care. Residents have the independence of living in their own flat but may have meals prepared for them.
You can move into this type of housing with your partner.
A care home will offer more personal care than sheltered housing.
As Parkinson's symptoms progress and your needs increase, a move to a care home may be a necessary consideration.
Care homes are staffed 24 hours and day and meals are provided. Some care homes provide nursing care too, which will provide extra support for medical needs. Some will also provide activities.
If you move into a care home you will live on your own rather than with your partner.
How you pay for a care home will depend on your personal situation, which will be assessed.
What should I think about when choosing a care home?
There are some care homes that have experience of dealing with specific conditions, including dementia.
Some homes may already have residents with Parkinson's, but some carers may not have experience of looking after someone with the condition.
Age UK produces a checklist to help you choose a suitable care home.
Training for care staff
If you'd like the staff in your care home to understand more about Parkinson's, our Education team can deliver an introduction to Parkinson's session for care staff.
We also produce resources to give care staff more information about Parkinson's.
Living apart from your loved one
Many carers have contacted us to say that they feel guilty that their partner has had to move into a care home - feeling that it's their fault for not being able to care for them properly.
From the number of people who've said this, it's a natural reaction.
But Parkinson's is a complex condition. Someone in the advanced stages of the condition may have considerable care needs - these may be too much for a carer to manage, particularly if they are older or have their own health concerns.