Something to contribute: Feeling excluded from care decisions made on behalf of someone with dementia

‘A close friend with dementia is in hospital after a fall. I’ve looked after him for years, but now I feel excluded from the decisions made about his care.’ 

If a person can’t decide something for themselves, someone involved in their life – and not only family members – could help work out what’s best for them. 

This is recognised by the Mental Capacity Act 2005 in England and Wales, and by both existing and new laws in Northern Ireland. 

Each decision is different, whether it’s about which treatment to have or what to have for lunch. 

Whose decision? 

If your friend can make a particular decision for himself, he should be supported to do that. He can involve you in this if he chooses. 

If there’s something he isn’t able to make a decision about, then other people will need to decide for him based on what would be in his best interests. 

As his close friend and long-time carer, you probably know things about what’s important to him.

How can I help? 

As his close friend and long-time carer, you probably know things about what’s important to him. This doesn’t mean decisions should be completely up to you, but you may have a lot of information that’s helpful to contribute. 

The law in England and Wales says that, if possible, this kind of decision should take into account the views of ‘anyone engaged in caring for the person or interested in their welfare’. 

In Northern Ireland, those close to the person should be involved where possible. 

What about power of attorney? 

If your friend has made a lasting power of attorney (LPA) for health and welfare, then he’s appointed someone as an attorney to make decisions about his care if he can’t do this himself. 

If this isn’t you, both his attorney and hospital staff should still try to get your views, since they still have to act in his best interests. 

In Northern Ireland, it’s not yet possible to make an LPA for health and welfare. However, this will change once a new mental capacity law comes into effect. 

Explain to hospital staff that you can help if decisions need to be made for your friend.

Explain, ask, remind 

Explain to hospital staff that you can help if decisions need to be made for your friend. Ask to be included in any ‘best interests’ discussions or meetings. Remind them about the law if necessary. 

Hospitals in England or Wales will have a Patient and Client Liaison Service (PALS) that could help you with this, or with complaining if you don’t get anywhere. Ask the hospital about how you can contact their PALS team. 

In Northern Ireland, contact the Patient and Client Council.