Decision-making and advanced planning

1. Summary

It should not be assumed that people with dementia are unable to make their own decisions. Individuals should be supported in making their own decisions about their care and day to day life for as long as possible. Alzheimer's Society also supports people with dementia planning ahead because it enables them to have a say in their future care and treatment.

The Mental Capacity Act 2005 must underpin the decision making and advanced planning process.  If implemented fully it can support and protect people with dementia who are no longer able to make and communicate decisions.

2. Background

It is important to recognise that a diagnosis of dementia does not necessarily mean that individuals can no longer make decisions for themselves. People with dementia lose capacity over time and the rate at which a person's condition deteriorates varies from individual to individual. With earlier diagnosis and new treatments, people are retaining capacity for longer.

All practical steps must be taken to help an individual participate in decision-making. Even if a person with dementia can no longer make complex decisions, such as where to live, it is likely that they can make day to day decisions. Once the person with dementia begins to lose capacity it is important that the carer and/or family is fully involved in making decisions about the person's care and treatment. The use of advocates may also be appropriate. Access to independent advocacy is currently limited. Alzheimer's Society would like to see access to advocacy services for people with dementia increased and information about using advocates made available to individuals using NHS or social care services.

An early diagnosis of dementia allows an individual to begin to plan for the future, while they have capacity, if they wish to do so. Alzheimer's Society supports advanced planning, including the use of advanced statements/decisions and lasting powers of attorney.  This can bring some reassurance to a person concerned about how decisions regarding their medical treatment might be taken should they lose the ability to make these themselves. Lasting powers of attorney also allow individuals to put their financial affairs in order. For further information please see Alzheimer's Society factsheets on advanced decisions and lasting powers of attorney.

The Mental Capacity Act 2005 must underpin the decision making and advanced planning process. This provides a statutory framework to empower and protect people aged 16 and over who lack, or may lack, capacity to make certain decisions for themselves. The act was fully implemented in October 2007 and applies in England and Wales. There is currently no legislation in Northern Ireland. For further information on the Mental Capacity Act 2005 and the legal framework it provides please see the Society's factsheet.

Alzheimer's Society has welcomed the new powers the Act has created. It has the potential to help transform the culture of rights and decision-making for people who may lack capacity. However, we believe that further work is required to ensure that the public understands their rights under the Act and that professionals understand the requirements of the Act and the powers that it creates. This will require a new concerted push involving widespread training for professionals using real case examples, work by professional bodies to raise awareness of the implications of the Act for professional practice and the government to play a leadership role.

To support implementation of the Act it is also vital that a monitoring framework is in place to understand whether the Act is being correctly applied. The Society suggests that a body such as the Care Quality Commission could monitor how health and social care services are implementing aspects of the Act such as assessment of capacity, determination of best interests and advance decisions.

We are also concerned that there is no system for registering advance decisions, which can result in confusion and risk. As more people start to make use of advance decisions it will be vital to ensure that they are effectively logged and communicated. Current delays in processing lasting powers of attorneys and prohibitive costs must also be addressed.

3. Deprivation of Liberty safeguards

Deprivation of Liberty safeguards have been introduced into the Mental Capacity Act and have been a statutory obligation since April 2009. The safeguards are in place for people who lack capacity to make decisions about their care or treatment, and who are deprived of their liberty to protect them from harm, but who are not covered by the Mental Health Act 1983 safeguards.

Alzheimer's Society hopes that the deprivation of liberty safeguards, when taken with the rights that people with dementia have under the Mental Capacity Act, will lead to a significant shift in the way we treat people with dementia.The safeguards should only be used as a last resort when it is in the best interests of the person and all practical and reasonable steps have been taken to avoid depriving somebody of their liberty. Furthermore, the safeguards provide a means for a representative of the person with dementia to challenge a deprivation of liberty if they believe it is inappropriate.

4. The Society campaigns for

  • Awareness raising for the public and full training for all health and social care professionals in the Mental Capacity Act 2005.
  • A monitoring framework to be put in place to understand whether the Act is being correctly implemented.
  • Greater awareness to ensure that people are fully informed about the status of advance statements and decisions.
  • A system in place for registering advance decisions to ensure that they are recorded and communicated.

5. References and further information

Alzheimer's Society factsheet on the Mental Capacity Act 2005

Alzheimer's Society factsheet on Advance decision

You can download a pdf form to help you draft an advance decision form

Alzheimer's Society factsheet on enduring power of attorney and lasting powers of attorney

Department of Constitutional Affairs (2005) Mental Capacity Act. London.

Department of Constitutional Affairs (2007) Mental Capacity Act 2005: Code of Practice. London: The Stationery Office.

Department of Constitutional Affairs Information Booklets on the Mental Capacity Act 2005: a range of six booklets for individuals who may not be able to make some decisions for themselves or may want to plan ahead; for family, unpaid carers and friends; for health and social care professionals.

Last updated: June 2009 by Louise Lakey

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