advocacy for people with dementia

This is a summary of guidelines followed by DAN members in providing advocacy for people with dementia.  Download the full document for more details.

Background

People with dementia are vulnerable to discrimination & abuse by others due to their cognitive impairment, fluctuating capacity & diminishing ability to cope independently. They are vulnerable when they do not understand what is happening to them, when others take over and speak for them and wherever dementia and its effects are not well understood. They are often misunderstood when they try to express themselves. If someone does not have good family and friends to support them they may well need the support of an advocate.

Four key challenges in dementia advocacy

Consent - is not always easy to obtain
Capacity - the ability to make decisions can deteriorate and fluctuate
Communication - this can vary according to each individual
Changes - as dementia progresses the advocate may need to adapt their approach.

Issues to consider

• What impact does dementia have on the individual client, their ability to understand, communicate and make decisions?
• Are there other factors that may impact your client’s ability to benefit from advocacy, other physical or mental difficulties
• Is the client able to instruct the advocate on the specific issue(s)?
• Is the client able to consent to any suggestions from the advocate?
• Do the client’s abilities fluctuate or are they getting progressively worse?
• What impact does the environment have on the person’s ability to communicate?
• What can be done to improve communication with the client to enable them to express themselves, understand the advocate better?
• Does the client understand the issues and are they able to decide what they want to do?
• What could the advocate do to understand the client better? 
• Is there anyone else you could talk to who would give some insight into the situation or confirm whether what they say is reliable or accurate?
• What tools or skills does the advocate have to improve communication? 
• Focus on the remaining abilities of your client and how you might use these?
• If the client is not able to instruct the advocate how will the advocate ensure that they are represented effectively? 
• Is the advocate familiar with the different approaches for non-instructed advocacy?

Key points People with dementia have as much right to advocacy support as any other vulnerable members of society. Approach the client with the belief that they have capacity to make decisions for themselves until proved otherwise. Every person experiences dementia in their own way – find out what impact dementia has on your client and how that affects their ability to communicate and respond to your role as an advocate. Look for ways to address any difficulties. Focus on the person, not the dementia. Take time to get to know your client and gain their trust. Build up a picture of who they are, what they want out of the advocacy relationship. Encourage and support your client to speak up or take action for themselves wherever possible. Agree with your client to speak up for them when they forget something or lose confidence. Always seek their consent before speaking up for them or acting on their behalf. Adapt your support to any changes in your client’s dementia symptoms. Ensure that relevant people listen to your client’s views and wishes. Ensure that your client is involved in decisions made about their lives and kept fully informed. Record all decisions agreed and how a person has expressed their wishes and views. Where memory falters and mental capacity fluctuates ensure you have recorded where there has been consistency in expressed views.    View or download the full guidelines.