The Mental Capacity Act 2005 protects people living with dementia. A friend of mine, who works in social care, had mentioned the Act to me in response to some concerns I had about my mother. Feeling overwhelmed by all that I didn’t know about caring for someone with dementia, I didn’t look further into it at the time.

At the Dementia Carers Support Training that I attended recently, I learned the basics about the Act, and where to go for more information. I have immediately started using my new knowledge to help me navigate issues around the question of where my mother should live.

The Act sets a helpful framework for carers to understand how decisions should be made, and who should make them. The law is based on five guiding principles.

Assumption of capacity

It is important to always start from the assumption that the person living with dementia has the capacity to make a decision.

Provide Support to Make Own Decisions

If someone struggles to make a decision the carer should find ways to support them. After a series of mini-strokes, and the subsequent confusion my mum faced, it was determined she didn’t have capacity to make a decision about how she would be cared for.

Allow Unwise Decisions

It is attempting to become over protective as the carer (family or professional) but this can put more restrictions on the person with dementia. Like the rest of us, they should be allowed to make unwise decisions.

I remember being told this when I called a UK-wide dementia helpline shortly after my mother was diagnosed. I understand the principle better now, but at the time I was bewildered and scared about the difficult decisions that needed to be made. Mum had deteriorated dramatically and suddenly and it was clear she couldn’t continue to live at home alone. It would have been more helpful if the adviser talked through the options about how to support mum to live at home. Instead the person at the end of the line alienated me when they talked about the rights of the person with dementia. Without understanding our situation, I felt the adviser was inferring I didn’t have my mother’s best interests (see below) at heart! I regret the loss of an important opportunity to help me make an informed decision. It’s a decision I have been querying since, as I describe in my post ‘Should I Bring Mum Home?’

NB. I have subsequently used dementia helplines and have had sympathetic advisers and excellent information. The telephone numbers for advice lines in the UK are at the bottom of this blog post ‘Take Care of Yourself First’.

Best Interests

If it is determined the person doesn’t have the capacity to make a decision, any decision should be made in their best interests. I now wonder if putting my mother in a care home was in her Best Interests.

Least Restrictive Option

If it is decided that the person is no longer able to care for themselves, and not able to decide on care options ‘the least restrictive option’ should be considered. In a Best Interests meeting in the hospital, my sister and I were encouraged to put my mother in a care home. No other option was presented or considered.

Making Decisions on Behalf of Someone

Making decisions on behalf of someone with dementia isn’t always straightforward. Under the Act, it is helpful and important to know that:

  • Every decision should be considered separately. Just because it is determined by a professional that the person with dementia doesn’t have the mental capacity to make one decision, it doesn’t mean they can’t make other decisions.
  • For big decisions an Independent Mental Capacity Advocate (IMCA) appointed by the Local Authority can help in theory. I’m not sure how this works in practice.

Deprivation of Liberty Safeguard

It is normally taken as a given that people living with dementia are locked in nursing and care homes for their own safety. The Deprivation of Liberty Safeguard protects people from being wrongly detained. Local Authorities must authorise whether a person should be restricted in this way. My mother’s assessment is coming up for review on 24 January. Such assessments are often made in consultation with a member of the family, or if not available an Independent Mental Capacity Assessor. This will be an important opportunity for me to raise concerns based on what I have observed, the care home’s reports, and what my mother has said to me about how she feels about being in the home and about being ‘imprisoned‘ as she has described it.

For more information about the Mental Capacity Act 2005, look at the Social Care Institute for Excellence website where you will find information in an easily digestible format, and some short videos for those who prefer to watch, rather than read.

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