Legislation and Dementia Care

Describe legislation and frameworks which govern work with individuals with dementia.

There are a few legislations that impact on how people care for individuals with dementia. Below I have listed a few.

Enduring Power of Attorney Act 1985

This legislation works with dementia patients because, as the condition makes their mental capacity to deteriorate, the individuals start to become unable to make certain decisions - whether these are health related or financial. When this occurs, an attorney is appointed so they will then manage the property and and financial affairs for them.

What is an attorney?
An attorney is an individual that is appointed the legal right to make certain decisions within their authority on behalf of an individual that has dementia.

An attorney has several duties and responsibilities that they have been set out to do. Some of these duties include things such as making sure they always act in the best interest for the individual that they are supporting and making sure they consider their needs and wishes as far as possible. As they are in a position of trust, they need to make sure they do not cross that boundary and always retain a professional outlook, making sure they do not take advantage of the individual.
An attorney knows to separate one individual's property and financial information from others, and even their own. This makes sure that then there is no confusion and each person knows where they stand. Another responsibility of an attorney would be to take into account other legislations (e.g. the Mental Capacity Act) and to support the Code of Practice when acting on behalf of the individual.

- Reference One and Two

Human Rights Act 1998

There are many guidelines that the Act requires people to implement and obey - some of the most important ones (in my view) are below.

"right to life"
"freedom from torture and inhuman or degrading treatment"
"right to liberty"
"freedom of thought, belief and religion"

I feel that the right to life is especially significant and related because sometimes, people may find it tough and upsetting when trying to cope with seeing someone (whether this is a relative, friend or even a stranger) mentally deteriorate. Often people wish that individuals with dementia are 'put out of their misery', but it would be against the Human Rights Act to allow someone to end an individual's life, as everyone has the Right to life.

Also, the freedom from degrading treatment can be linked to an individual experiencing dementia, because even though there are few people who would purposely hurt an individual, there are some people that might, for example dementia patients might have soiled themselves, but the carers might leave them in their dirty clothes and waste for hours on end, just so that they wouldn't have to continually take them to the toilet or changing them. Also if personal care was carried out in full view of others it may make the individual feel degraded, and this also links to having the right to privacy. Additionally, another example would be keeping a resident in their room in their bed or wheelchair all day, because either they cannot be bothered to move the individual or feel it would be less effort and less to clean up than if they moved often.

- Reference One and Three

Data Protection Act 1998

The Data Protection Act ensures that people's personal data is kept protected. A few of the rules that this Act sets are things such as making sure information is used for limited, specifically stated purposes, not kept for a longer amount than needed. However, in some cases when concerning dementia patients, some of their attorneys have been denied access to information about the individuals that they represent because the Data Protection Act states that there are stronger legal protections for more sensitive information - one of them being health (dementia).

Even though this legislation is in place to benefit people, it can have negative consequences - as mentioned above - because it means that some people, even though may be trying to help an individual, might not be allowed access to information that could help them.

- Reference One and Four

Mental Capacity Act 2005

What does capacity mean?
Capacity means the ability to make a decision about a particular matter at the time the decision needs to be made.

This Act provides a framework for people who lack the capacity to make decisions on their own, or who have the capacity at the current time but may want to make arrangements for the future if they end up lacking this mental ability.
Within this Act it sets out who can make the decisions, in which situation and what they will need to do in order to go about it.

The main five points that this Act promotes are:
- "every adult has the right to make his/her own decisions and must be assumed to have the capacity to make them unless it is proved otherwise".
- "a person must be given all practicable help before anyone treats them as not being able to make their own decisions".
- "just because someone makes what might be seen as an unwise decision, they should not be treated at lacking capacity to make that decision".
- "anything done or any decision made for a person who lacks capacity must be done in their best interests".

- "anything done for or on behalf of a person who lacks capacity should be the least restrictive of their basic rights and freedom" - this also links in with the Human Rights Act 1998.

The Mental Capacity Act is crucial when referring to legislations' that help govern work with individuals that have dementia, and this is because dementia is all about the mental deterioration, which this Act helps see who is fully able and has the capacity to make certain decisions.

The people that can be protected by this Act are individuals that may have a learning disability, a mental health problem, a brain injury, stroke or dementia.

Decisions that are covered by the Act are things such as choosing where to live, and to see the different treatments or care that is, or will be needed. Also what types of personal care and how it is given is covered by the Act, as well as their dietary needs and what foods they consume.

When an individual is capable, they are able to make a decision however when a person with dementia is incapable of making this decision then their views must be represented by someone who has their best interests at heart (this could be an attorney, which I have written about under the 'Enduring Power of Attorney Act 1985'.

- Reference One

Safeguarding Vulnerable Groups Act 2006

This legislation has been put in place to promote protection towards vulnerable individuals - mostly the elderly.

This Act had followed on from an enquiry in which it had criticised the system for checking individuals who want to work in a health and social care environment with vulnerable adults (or children), seeing it as weak and there were not any processes undertaken to see if they're safe to work with these vulnerable people or not.
With this Act, it has ensured that workplaces and employers must undertake certain procedures when recruiting new members of staff, and these procedures include things such as completing a Criminal Records Bureau (CRB) Check, checking the Adults Barred List and the Protection of Vulnerable Adults (POVA).
This Act brought into being the Independent Safeguarding Authority (ISA) to hold current updated records that recorded any criminal activity by individuals in a health and social care environment, e.g. a care home.

The elderly are especially vulnerable as it is, let alone an elderly individual with dementia, so it is crucial that they are safeguarded well and that many precautions are taken to ensure the protection of them, and this Act will encourage and promote this.

- Reference One

Not only are there legislations, there are also frameworks put in place to help with guidance. Some of the relevant frameworks concerning dementia are:

Putting People First: A shared vision and commitment to the transformation of adult social care 2007

This framework 'Putting People First' is all about the personalisation of care and how the elderly is thought of by being shown support and respect.

Some individuals may request an assessment in which to see what care and services they may need. The person that will perform this evaluation (making sure they listen to all of the needs the individual may want/has) is someone of the social services environment - usually a social worker.

Once agreed on the services, cash is given and the person must keep some sort of documentation in which it shows the services that have been identified and agreed, and the record must show how the money has been used.
After November 2009, people that lack capacity are able to make direct payments - having consented to them first, but it means that their carer or a suitable person will have to manage the payments. For people that are in the early stages of dementia or that do have capacity to make decisions, making direct payments can be beneficial as it still allows the individual to remain independent and having their choice. As they gradually start to lose capacity, the payments will remain as they had previously asked; making sure their wishes are respected.

To accomplish the goals set by the framework, many different bodies within the social care sector have to work together. These different bodies can be:

  • Social Workers
  • Providers
  • Regulators
  • Professional Leadership
  • Local Government
  • Central Government

The Local Government, to help this will need to change how their money is spent. (As people are living longer, there is more risk of individuals having dementia, which causes more and more people needed care and support services.
The Central Government will need to provide extra money in order to meet the needs.

Not only are there different bodies involved, also the different services will need to work together and look at:

  • Health Care
  • Social Care
  • Housing
  • Employment
  • Benefits Advice

Having more partnerships means that there is a better performance so that individuals' needs can be met.

- Reference One and Five

Living Well with Dementia - The National Dementia Strategy 2009

This framework wants to develop services for individuals with dementia and their carers that are up to date. They want to meet everyone's need, despite different characteristics people may have.
They have a strategy which is a five year plan, and this is to achieve the goals.

The different individuals that may be involved with the strategy are:

  • People with dementia
  • Carers (these can be formal carers from a company or simply a relative or friend that may take care of the person)
  • Health and Social Care professionals (social workers, nurses etc)
  • Anyone affected by dementia

There are three important actions that need to be done in order to improve the quality of life, for not only individuals with dementia, but their carers too.

The steps are:

  1. "Ensure better knowledge about dementia and remove the stigma"
  2. "Ensure early diagnosis, support and treatment for people with dementia and their family and carers"
  3. "Develop services to meet changing needs better"

Not only are there three steps that will be taken to improve the quality of life and to live well, there are also seventeen key objectives. These are:

  1. Raise awareness of dementia and encourage people to seek help
  2. Good-quality, early diagnosis, support and treatment for people with dementia, and their carers, explained in a sensitive way
  3. Good-quality information for people with dementia and their carers
  4. Easy access to care, support and advice after diagnosis
  5. Develop structured peer support and learning networks
  6. Improve community personal support services for people living at home
  7. Implement the 'New Deal for Carers'
  8. Improve the quality of care for people with dementia in general hospitals
  9. Improve intermediate care for people with dementia
  10. Consider how housing support, housing-related services, technology and telecare can help support people with dementia, and their carers.
  11. Improve the quality of care for people with dementia in care homes
  12. Improve end of life care for people with dementia
  13. An informed and effective workforce for people with dementia
  14. A joint commissioning strategy for dementia
  15. Improve assessment and regulation of health and care services and of how systems are working
  16. Provide a clear picture of research about the causes and possible future treatments of dementia
  17. Effect national and regional support local services to help them develop and carry out the strategy.

So, what will these mean for people that are affected by dementia and their carers?

Having these objectives will help people understand the benefits of early diagnosis and care, and it will encourage the prevention of dementia.
People with a dementia and their carers will be able to see a dementia adviser, who will help them throughout their care to find the right:

  • information
  • care
  • support
  • advice

People with dementia and their carers will be able to get support from local people with experience of dementia and will be able to take an active role in developing local services. This is a great way of how the framework would govern work with people with dementia.

In my opinion, this framework is definitely one of the best frameworks or legislations that will help govern work with individuals.

- Reference One and Six

Lauren Hewitt

Task Seven - Legislation and Dementia Care
Dementia and Elderly Care
Submission Date: 3rd June 2015.