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the challenges of dementia advocacy

 

Advocating for people with dementia reflects the challenges faced by any advocate working with a client who cannot instruct.  Four key challenges are: Communication, Capacity, Consent and the Changes that happen to someone who has a fluctuating and diminishing condition.

communication

This is considered the key to a good advocacy relationship, the building of trust and rapport that gives the person confidence that their advocate will speak on their behalf accurately and represent them well.  When people are in the early stages of dementia the advocate's task may be to support them to speak up for themselves.  More often advocates are working with people who are less able to voice their own wishes as both speech and language may be affected.  The advocate will need to assess the level of communication the individual has and adapt their own skills to enable communication to take place.   This may mean observing body language, facial expressions and the use of visual aids like photos, pictures or the communication tool Talking Mats™.  We are often very reliant upon verbal or written forms of communication and it is a real challenge when these are not available.  As advocates we need to remember that all behaviour is also a form of communication and there is much we can learn from a person's past history that may help us understand their present behaviour.  DAN provides a training day on Communication Skills for advocates working with people with dementia which helps the advocate to understand the communication challenges for the person with dementia and how best to address them.  DAN has also developed some good practice guidelines to support advocates.

capacity

The nature of dementia as a progressive illness means that the mental capacity of someone with dementia is likely to change over time.  As a person progresses through their dementia, their capacity to understand the issue and to make a decision based on their ability to reason lessens.   Following the principles of the Mental Capacity Act 2005 advocates start working with a person with dementia with the assumption that they do have mental capacity.  People with dementia especially in the early stages are often able to understand the issues and retain relevant information if they are given time and information in a manageable and appropriate format i.e using simple language to explain something more complex or presenting it in a visual format.  However, even people in the middle to late stages of dementia will have a level of mental capacity which will enable them to be involved in making some decisions. 

Mental capacity in someone with dementia may also fluctuate from day to day and visit to visit.  The advocate therefore needs to be flexible and innovative in their approach.  In these situations the advocate cannot always take the first response to a question.  The advocate will need to revisit conversations, asking the same questions at different times and in different ways to establish consistency in the client's feelings and expression.  The advocate needs to be as sure as possible that they have understood the person's wishes or views.

The level of insight the person has into their own situation and abilities is also likely to be affected and will diminish with time. This can often present a challenge for the advocate - representing the wishes of a client who has no insight into their needs, is living in a different reality and is unable to understand the risks of some decisions.  The advocate has the dilemma of acknowledging the reality of the person and the feelings and wishes attached to that and being truthful in order to find a solution to the issue that best meets the needs of the person.  The advocate must also remember that the Mental Capacity Act states the right to make eccentric and unwise decisions.

The Mental Capacity Act provides clear guidelines as to what needs to be considered when assessing mental capacity, all professionals, including advocates should be using these as the benchmark.  Although assessment of capacity is not part of the formal role of an advocate, advocates often need to make their own assessment of the person's capacity in order to have a clearer picture of the decisions in which the person can be involved and at what level.

consent

Gaining a client's consent to work with and on behalf of them is an essential principle for an advocate.  However, because of the nature of dementia, it is not always possible to gain consent from a client or in fact be sure that the consent you gained previously is still relevant.  Therefore, the client's consent needs to be reviewed regularly - in fact at every visit.  This will allow the advocate to be confident that the client is still comfortable with their presence.  The impact of memory loss and lack of mental capacity may mean that the advocate will continually need to review consent, even during a visit.  The person may not be able to verbalise their consent and so the advocate needs to look for signs that the person is happy (or not) for them to spend time with them.  The person may show signs of agitation or anxiety or may even walk away - these may be signs that they are not happy with your presence.  When the person with dementia is no longer able to give consent, the advocate will need to seek consent or a mandate from a third party.  On some occasions the person with dementia may not think they have need of an advocate because they do not have insight into their real circumstances - the advocate will need to use their interpersonal, communication and befriending skills to encourage the person to accept them.  Initially visits may just be a friendly chat before any talk about problems or issues.

changes

The progression of dementia means that there may be changes all along the development of the advocacy relationship - changes in the ability of the person with dementia to express themselves or understand what is said to them, changes in the ability to make decisions, changes in the ability to consent to an advocate's support, changes in behaviour and other symptoms of dementia.  Opinions, views and memory may change on a daily basis and the advocate then has to constantly adapt their approach and review their assessments.

There are many other challenges to advocating for someone with dementia.  DAN networking events provide opportunities for advocates to discuss some of those challenges and learn from each other's experiences.  However difficult those challenges DAN believes that people with dementia have a right to be supported and represented effectively.  Without an advocate their voice may not be heard.

view our good practice guidelines developed by DAN members.