Mental Capacity Bill: Last chance to protect the rights of people with dementia

We are calling for more changes to the Mental Capacity (Amendment) Bill, which is currently being debated. Here are our concerns about what it'll mean for people with dementia.

Our helpline advisers are here for you.

Our National Dementia Helpline receives over 100 calls a month about the Mental Capacity Act. It is clearly a confusing system that requires change.

However, we are determined that the Government do not replace one broken system with another. 

The Government’s Mental Capacity (Amendment) Bill seeks to reform the current safeguarding system known as Deprivation of Liberty Safeguards. The Bill will be going through its Third Reading in Parliament on Tuesday 12 February. 

Alzheimer’s Society has recently raised concerns about what the new law will mean for people with dementia. We’re particularly concerned about greater responsibility given to care home managers.

In the proposed new system, there are three assessments required to decide if a person should be deprived of their liberty.

One of these is the 'necessary and proportionate assessment'. Part of this requires care home managers to consult with the person to understand their wishes and feelings about their proposed care arrangements. 

How is the Mental Capacity Bill different from what's currently in place?

The proposed Bill would replace the safeguarding system that is used when it is necessary to deprive a person of their liberty in order to provide care and treatment. 

More than half of the people deprived of their liberty under the current system have dementia.

We believe the proposed changes could negatively affect people with dementia by not providing them with the safeguards they need and deserve

We are calling for the Government to make more changes 

Alzheimer's Society has been working together with other charities and partners as part of the Mental Capacity third sector group.

Together, we have been lobbying the Government to improve the proposals since they were first published last summer. 

We have lobbied the Government so that now: 

  • The cared for person must be consulted on their wishes and feelings 
  • Care home managers will not be carrying out the necessary and proportionate assessment. This will now be conducted by someone with appropriate skills and training from the responsible body, and they must have regard to the individual’s wishes and feelings on proposed arrangements  
  • Care home managers are no longer the gatekeepers when people need access to a trained advocate
  • Information on rights should be provided to the cared for person

We are asking the Government to go further to improve the Bill for people affected by dementia:

  • Care home managers should not be consulting with the cared for person to ascertain their wishes and feelings in relation to proposed arrangements.  Instead, an independent professional should undertake the consultation
  • The length of time a person can be deprived of their liberty should be no longer than 12 months, instead of three years as proposed by the Government 
  • Advocacy should be available for all and should not be subject to a best interest test 
  • Information on rights must be provided before the authorisation is granted

Vulnerable people with dementia deserve to have their rights protected by a system that safeguards not harms them.

We are working hard to ensure that the Government listens to our concerns.

  • The Bill will be debated in the House of Commons on the afternoon of Tuesday 12 February. You can watch the debate live on the Parliament website.
  • Join the conversation and follow Alzheimer’s Society on Twitter (@alzheimerssoc) for the latest updates. 

Parliamentary copyright images are reproduced with the permission of Parliament.

Get involved

If you want to get involved with helping Alzheimer’s Society to campaign around this Bill, please contact us.

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2 comments

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My wife has severe dementia and she opposes all kinds of help, like washing her hair, domiciliary care, care of teeth, fingers and toes. I have trialled several agencies with no success but I myself could not help her as well. For her health and safety, can you recommend a method I can help her. Like giving her Diazepam to sedate her? I thought of getting respite care but what if she refuses to go to a respite centre or home for a week or two? She sticks to me like glue.

Hi Peter, thank you for your comment.

I’m sorry to hear of the current situation, which sounds very difficult.

You may wish to seek advice from a GP regarding diazepam, unfortunately we are not trained at Alzheimer’s Society to give medical advice.

You mention your wife “sticks to me like glue.” I imagine this may be very exhausting. It is important that you consider supportive options for you and your wife. Alzheimer’s Society provides local support in various localities in the country. A local service could be a good source of support for you in terms of practical and emotional support. You can find a local service at https://www.alzheimers.org.uk/findsupportnearyou

Admiral Nurses are dementia specialist trained nurses who provide practical and emotional support to people affected by dementia - you can contact them on www.dementiauk.org/how-we-help/admiralnursing, telephone: 0800 888 6678

In terms of respite care, you might want to look at our information about Respite/Replacement Care in England: https://www.alzheimers.org.uk/get-support/help-dementia-care/replacemen… This looks at the different types of respite care, the costs involved, ways in which to access respite care.

You may also wish to consider contacting your local Adult Social Services who could carry out a Care Needs Assessment for your wife and a Carers Assessment for you. Both these assessments could help identify how the Local Authority could meet both your needs to support you. The Local Authority can source respite care.

The following website lists contacts for adults social care teams in Local Authorities across England & Wales: http://adults.ccinform.co.uk/local-contacts-page/

In terms of washing, this can be very difficult to manage when a person is reluctant to engage. I have provided some tips below that you may find useful. You might also like to look at our information about Washing and Dressing: https://www.alzheimers.org.uk/get-support/daily-living/washing-and-bath…

Useful Tips.
• Aiming to make the experience as pleasant and relaxed as possible. Nice-smelling bubble bath or relaxing music can make wash time feel like a treat rather than a chore.
• Be sensitive to the person's preferences.
• Using the time to have a chat, as well as to explain what you are doing.
• If the person finds the experience difficult, imagining how it would feel in their situation can be useful.
• Making a joke about any muddles or awkwardness may help both people to feel better.
• Be flexible − different approaches may work at different times.
• Be organised − making sure everything is ready and to hand before starting.
• Don't have too many unnecessary products in the bathroom as this may be confusing for the person.
• Make sure the person is thoroughly dried (especially in the skin folds) to prevent the skin from becoming chafed.
• While the person is undressed a check for any red or sore areas can be made. Any concerning observations can be brought up with the district nurse or GP.
• Afterwards the person may like to moisturise, put on some perfume or aftershave and style their hair. This can help create a feeling of well-being.

I hope the above is helpful.

Talking Point is an online forum run by Alzheimer's Society. It is an online community that provides valuable support, tips and advice to anyone affected by dementia; this includes family friends, carers as well as people with dementia. Some people have found this to be a useful support. I have attached the link for you. http://forum.alzheimers.org.uk/forum.php

Should you wish to discuss any of the above please do not hesitate to contact National Dementia Helpline. Telephone: 03002221122; Email: [email protected]

The Alzheimer's Society Helpline Team

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