Practical matters

If the person you are caring for is an adult, they may at some point become unable to manage their own affairs, such as paying bills or legal matters.

The rules and options in the UK around managing someone’s affairs for them vary depending on whether you live in England, Scotland, Wales or Northern Ireland.

A key question is whether the person you are looking after is currently:

  • able to make decisions for themselves (called ‘having mental capacity’)
  • unable to make decisions for themselves (called ‘lacking mental capacity’).

If the person you look after is able to make their own decisions now, but may not be able to in future, you could discuss them granting you Lasting Power of Attorney (LPA). You can use this while they still have capacity, and continue to use this if they lose capacity.

There are two types of LPA:

  • health and welfare
  • property and financial affairs

You can choose to make one type or both.

In England and Wales, The Mental Capacity Act 2005 provides the legal framework for making decisions on behalf of people who lack the mental capacity to make decisions for themselves. The Mental Capacity Act Code of Practice explains how this works in more detail.

The Carers UK website has a lot more detail on this and related matters, including the different rules in different UK nations.

Benefits

To help someone with benefits, you can apply to be an appointee for the person you are caring for. More information is available on the Government website and you can also contact the relevant benefit department to find out more.

There is also more information elsewhere on this site, including in our Getting Help/At risk section including information about financial matters, insurance and power of attorney.

Carers of children and young people

Please also see more information for carers of children and young people elsewhere on the site at Getting help: Juvenile Huntington’s Disease.

You can find out a lot more about being a carer and what support and help is out there for carers of people of all ages online from Carers UK and the Carers Trust. There may also be local carers’ groups and charities in your area.

The Carers UK adviceline is tel: 0808 808 7777.

Living with Huntington’s disease and caring on a daily basis can be very challenging. Getting the right information and support is vital and if you can’t find what you are looking for, we’re here to help.