Advocacy in Dementia

What Is Advocacy In Dementia?

Throughout a person's lived experience of dementia, the type of support they might need to express their views, make decisions, and access entitlements will vary.

It is acknowledged that the term "advocacy" can be used to mean different things for different people. For some, acting as an "advocate" can be part of a friendship or family relationship with the person or as part of a more general support worker role.

For others, part of their professional role will be to advocate for the people they support. In a few situations, a person who is independent of the person's circumstances can only take the role of an advocate and any decisions or actions that need to be taken; this is known as an "independent advocate."

Sometimes the involvement of an advocate is required by law, and there are particular or specialist areas of advocacy undertaken by specialist independent advocates. Other than when appointing an advocate is required by law, it is different from the intention of this plan to prescribe the type of advocacy or provider of advocacy at different stages.

However, the potential value of independent advocacy as "the voice of the citizen" should be recognized at all stages of a person's lived experience of dementia, explained, and activities offered as a rights-based approach to service delivery.

How Do I Advocate For Someone With Dementia?

When advocating for a family member or friend with dementia in a medical environment, keep the following in mind:

1. Symptoms Won't Be Noticeable

Early dementia symptoms may be mild. Experts often minimize family concerns or blame natural aging. New or worsening symptoms? Show the doctor your loved one's symptoms; this gives the doctor objective data on symptom progression. If something feels off, don't ignore it.

2. Symptoms May Come And Go

Individuals who have dementia may experience a wide range of symptoms. It's unusual for someone's performance to suddenly tank after a string of high-quality days or weeks. In most cases, a slow deterioration in efficiency is to blame. Since this is the case, it may be challenging to get an accurate diagnosis quickly. A family member may be severely hindered when you call to schedule an appointment. If you wait a few weeks before taking her to the doctor, she may be completely well and back to her old self. Some people with dementia can put on a brave face in public, especially while seeing the doctor, and may fool the staff into believing everything is well; this is an issue that needs to be considered. This might cause your well-meaning loved one to doubt your honesty and suspect that you are exaggerating your symptoms to seek attention. Because of this, it may be harder for them to seek the help they require.

3. A Definite Diagnosis Could Take A While

Dementia cannot be diagnosed without a battery of tests. A thorough medical history and physical examination, mental state and psychological testing, blood tests, and brain imaging are required to determine the root of the symptoms. Unfortunately, those who are farther away from the patient than they are may miss the initial signs because of how slowly they develop.

If you're fighting for a family member with dementia, remember that it's a marathon, not a quick dash. It's easy to get downhearted when you have to keep telling the same story or go through the same routine (going to the doctor, repeating the story, etc.). Speak up and keep fighting for what you believe in. Share specific examples of the problems you're encountering. (Video is crucial!) In this case, it's essential to ask, "Could this be dementia?" The process can often be advanced even by guessing at a probable diagnosis. Believe in yourself; you can succeed.

Why is it important to advocate for a person with dementia?

Dementia patients often can't communicate their needs or desires. Earlier in dementia's progression, a family member or friend may help them present their situation to healthcare providers, legal or financial counselors, or other family members. When a person has advanced dementia, they need a trusted person to represent their wishes and values. Advocates speak up for dementia patients.

How do you empower someone with dementia?

1. Become Knowledgeable

Your ability to educate people about dementia will increase in proportion to the depth of your understanding of the topic. Find out what you're up against, how your condition could change over time, and how complementary and alternative methods might help you feel better.

2. Don't Make Assumptions 

A dementia diagnosis does not automatically equate to a complete loss of cognitive capacity. However, people living with Dementia in the early stages of the disease sometimes experience self-doubt. 

3. Advocate 

Those in authority (usually those without dementia) must speak up. Advocating for others can improve their quality of life in many ways, such as reminding people that a person with dementia can still show her personality by choosing her clothes and ensuring that an avid gardener has space to plant flowers. Advocates are a team. Tell officials about your dementia-related struggles.

4. Listen

If you know someone with dementia, ask them how they are doing and be ready to listen without passing judgment. Then, put off any attempts at repair for the time being. Instead, to get the most out of your time with her, ask her a few questions and listen carefully; you never know when you'll get the chance to follow up on anything she mentioned that might be useful.

5. Use Cognitive Exercises To Adapt

Providing dementia patients with additional cognitive exercises where they may learn and practice techniques to maintain their independence for as long as possible is one way to empower these individuals. For example, one study revealed that activities that included following a procedure, such as taking a cooking class, helped people with early-stage dementia.

How Do You Show Compassion To Someone With Dementia?

1. Be Mindful Of Your Behaviour

The Alzheimer's Association claims that just 7% of communication is words, whereas 38% is the tone of voice and 55% is physical cues or expressions. Yet, patients with dementia often rely on body language to help them make sense of their surroundings. This is how they make sense of things they otherwise wouldn't be able to.

2. Keep Questions And Replies Brief

The length of questions and answers should be kept to a minimum. Ask only one question. Say, "It's dinner time," when you're ready to eat. Is it steak or pasta? Change "What do you want for breakfast?" to something more specific.

3. Simplify Decision-Making

Provide the person with dementia with a choice. For example, ask which color shirt they would like to have on instead of suggesting what to wear.

4. Don't Ask "Why" Or If They "Remember"

Your loved one with dementia will likely have no recollection of their actions. Therefore, do not inquire as to "why" or whether they "remember" Neither of you will benefit from further questions like these. Eliminate wasted effort by not pressing them for explanations or checking their memories.

5. Don't Argue, Correct, Explain, or Rationalise

Cognitive impairment and death of cells in the brain are the hallmarks of dementia. This means your family member or friend will likely make statements and take irrational, false, or embarrassing actions. In addition, they might become irritated if you try to correct, explain, or defend themselves to them.

6. Put Yourself In Their Shoes

Think about how you could react to this line of questioning and the resources you might be squandering. First, you'll feel like giving up.

7. Speak Slowly

People living with Dementia may need more time to process information. You can restate what you just said verbatim if necessary. Talk more slowly and distinctly.