Holding a hospital patient's hand, with nurses talking in the background

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

If you’re involved in the life of a person with dementia, you may have a valuable contribution to make if ‘best interests’ decisions are being made about their care.

‘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

Dementia together magazine: Apr/May 20

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I have left a phone message but thought I'd drop a message on here too. My mum has lived with us for the last 5 1/2 years. She has vascular dementia and has a personal budget through social services. She has two wonderful carers who know her well and together we provide mum with excellent support.
last week mums health started to deteriorate and social services decided that mum should be fast-tracked for Continuing health care. No one explained to me at any point what that meant. When they came out to assess mum they told me that mums carers could no longer support her with her palliative care and they were going to be replaced with agency care workers, with no continuity of care. I don't feel mums needs or our views are being taken into account, her carers know her really well and she trusts them, different carers in every day is not in mums best interest. I feel we are being bullied into accepting this process and mum has just become a pawn between two agencies about funding. I was diagnosed with cancer three weeks ago and this is causing me and the carers a lot of stress. We don't have POA for her health, only finances and property so I'm anxious they will take any rights away from me as to mums care. Can you advise where we sit with this please as their approach does not sit comfortably with me as to mums rights and what is best for her.

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Hi Debi, thank you for your comment. I very sorry to hear about your mum.

Hopefully our helpline advisers have called you back by now, if not the number is 0333 150 3456 and open times for the helpline are:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

If you're looking to talk to others who may be going through a similar situation as you, take a look at our online community, Talking Point. You can share your experiences and ask questions, or just read what other people affected by dementia have to say: https://forum.alzheimers.org.uk/

I hope this helps.

Alzheimer's Society blog team

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I wonder if someone can help my husband was sectioned as a result of dementia in May 20 he has been moved from one care place to another ,now they have put him in a nursing home 3 weeks ago but have now decided he does not need nursing care hes been passed around like an unwanted dog
They have last week re-assessed him but he has Dementia,Heart failure but can walk,feed himself and is continent at the moment so I am now going to have a financial assesment for him.
This is ruining my life and making me so ill I am 73 and he is 79 as I am living on his pensions we have a home still on a mortgage I know they cannot take my home but what about his pensions I live on these as we both used to this pays all the bills etc.
His works pension is assigned to me when he dies
I work but am leaving soon any advice please

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Hello Marilyn, thanks for getting in touch.

We are sorry to hear the experience both you and your husband are having. It is important to ensure you have a good support network around you. This may include people who have experienced similar challenges who may be able to share some advice, or just offer reassurance – a visit to our online community, Talking Point, may be helpful: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

First and foremost, check which section your husband was placed on. If he was sectioned under section 3 of the Mental Health Act, his care should be being provided for free under Section 117 aftercare. This may not be the case but worth checking.

We are presuming the assessment your husband recently had was for NHS Continuing Healthcare (CHC) to assess whether he is considered to have a ‘Primary health need’ (as opposed to social care needs) and he did not qualify.

This is not uncommon; CHC can be very difficult to qualify for but if eligible, the person does not have to pay care fees as they are covered by ‘health’. You can appeal this if you disagree with the decision, but it can be a complex and laborious process. You can find out more information about CHC in our guide 'When does the NHS pay for care?' (https://www.alzheimers.org.uk/get-support/publications-and-factsheets/b…) or by contacting the Dementia Connect support line and asking one of our dementia advisers to be referred to our CHC appeals service.

Regarding the financial assessment for social care, the Local Authority should be able to provide you or signpost you to appropriate financial advice. This comes under their Care Act duties.

Only your husband’s own income and savings should be included in the financial assessment, not your own. You are correct that the house you shared should be disregarded (ignored) in his financial assessment, so his share cannot be used for care fees as you live there.

Most of his other income and savings can be used for his care fees. The fact his works pension is assigned to you when he dies doesn’t protect this or usually change anything while he is living, I am afraid.

If you are living on his benefits or pensions, I would advise you contact somewhere like Citizen’s Advice, Turn 2 Us or Age UK and ask for a full benefits assessment for yourself. This is especially important if you are soon to leave work. There may be help you can qualify for now that you are assessed as a single claimant rather than a couple. Lots of benefits such as Pension Credit go unclaimed by eligible people every year and can make a big difference.

A few other things to be aware of;

• Your husband can ‘pass back’ 50% of any occupational pensions he has to you are home to help you. The Local Authority must allow him to do this. This is occupational pensions only, not his state pensions. It’s important to have a benefits check to help you decide whether accepting this would financially be in your best interests.

• The Local Authority can use their discretion to increase his Personal Expenses Amount and allow him to pass some of this back to you too. The Personal Expenses Amount is the amount of his income they must leave him with after paying care fees and is usually £24.90 per week in England. This is discretionary so they don’t have to do this but they may do to cover certain household bills if asked, for example home insurance.

For more information on the financial assessment for his care, see our 'Paying for care and support in England' factsheet (https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care) or call our Dementia Connect support line on 0333 150 3456.

We hope this is helpful.

Alzheimer's Society Knowledge Officer (Welfare and Social Care)

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Hi. My mum was moved into a care home in January by my sister and stepdad. Since then they have made all decisions for mum without the other 4 children being involved at all.
They decided during the pandemic lockdown that we were to have no contact with mum - no calls, skype calls, cards, letters or anything that mum would know had come from us. The home manager went along with their instruction although we were saying we didn't agree. Now it has come to arranging some sort of visiting and I'm being told what I can do and when by my stepdad & sister and if i complain they are saying they will stop me having the visits (& my brother & sister also if they don't do as they say).
Mum didn't make a power of attorney and so can my stepdad and one sibling make all of these decisions alone and are the home entitled to follow what they say and not do what's in mums best interest or indeed try and ask mum what she would like to happen.

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Hi Helen,

I'm so sorry to hear about this situation with your mum.

If you call our Dementia Connect support line on 0333 150 3456, you can talk to a dementia adviser about it. They can listen to you and provide some information, advice and support. More details (including opening hours) are available here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope this is helpful, Helen.

Alzheimer's Society blog team

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My mum has vascular dementia and is deemed to have fluctuating capacity. The ward caring for her will not give me any information because my mum has told them not to. We therefore have no information and due to current situation are unable to visit my mum and see her for ourselves. They are claiming they are abiding by the MCA. Is this correct?
Thank you.

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Hi Samantha,

Thanks for your comment, and sorry to hear about this situation with your mum.

Capacity can be a difficult issue, and people living with dementia can have it at some times and not others, as you say.

We have some information on our website about capacity and the Mental Capacity Act, which you may find helpful: https://www.alzheimers.org.uk/get-support/legal-financial/decision-maki…

It's hard to say from your comment whether the ward is abiding by the MCA or not, but if you call our Dementia Connect support line on 0333 150 3456, a dementia adviser will be able to give you some more tailored advice.

Hope this is helpful,

Alzheimer's Society blog team

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My sister in law was diagnosed around 3 years ago. She decided not to give power of attorney to her brother ( my husband) but to two friends. My husband was only given a few hours to talk to her over the phone to give her the opportunity to include him or another relative as a third PoA. He was given this opportunity by one of the friends as she felt uncomfortable with the decision his sister had taken.

Two weeks ago the PoAs decided that it was best for my sister in law to live with us during the COVID -19 crisis. One of them dropped her off. Where do we stand legally? She could be living here for 6 months or more.

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Hello Jayne,
Thank you for getting in touch. To provide you with the best answer, we spoke with one of our Knowledge experts, specialising in Legal and Welfare Rights, who said the following:

'The friends with Power of Attorney (PoAs) will have decided that your sister-in-law moving in with you during the coronavirus outbreak is in her best interests. But in order to make a 'best interests' decision, the PoAs must consider all available options.
'If you do not want your sister-in-law living with you (i.e. if this was an option that should not have been considered as 'available') then you cannot be forced to have her stay there. The PoAs would have to reconsider their decision and find alternative, appropriate residence and care (if needed) during this time.
'If you are happy with your sister-in-law living with you, but you have concerns about day-to-day decisions (e.g, what someone will eat, wear or do on a daily basis), then under the Mental Capacity Act (the law that governs this area), for these general types of decisions, the person there at the time can make the decision if they are needed to. Therefore, there are many day-to-day decisions that you can make without needing a formal legal power, such as PoA.
'If there are big decisions that need to be made, such as care, treatment or financial decisions, then the PoAs would need to be involved. You can also speak to the PoAs about finances (such as for food). They should look into this and ensure that your sister-in-law has the food that she needs, and other bills that she creates are paid.'

In the meantime, we strongly recommend contacting our Dementia Connect support line for information and advice on any support or caring questions you have. Our dementia advisers are available on 0333 150 3456 seven days a week. You can find opening hours for our Dementia Connect support line here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line But please note, they cannot give legal advice.
We really hope this helps, Jayne.
All the best

-
Alzheimer's Society website team

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