Starting the conversation about healthcare through the end-of-life is an incredibly important task for caregivers, especially when the person you care for has Alzheimer’s or other forms of dementia*. They can lose their memory, ability to perform daily tasks or their reasoning ability over time.
It’s best to have these conversations early so you can better understand their wishes, values and overall health status and reduce the burden of decision-making during critical medical situations.
According to The Conversation Project, caregivers can prepare themselves to make healthcare decisions for their loved ones with dementia by doing the following essential steps:
- Learn from Others
*For simplicity, we will use the terms dementia/dementias to refer to Alzheimer’s and other forms of dementia.
About Alzheimer’s and Dementia
Before we begin, let’s review the basics of Alzheimer’s and Dementia. According to the Alzheimer’s Association, dementia is not one single disease, but a term that covers a broad range of specific medical conditions, including Alzheimer’s Disease. These diseases are caused by abnormal brain changes and can affect cognitive abilities, memory and reasoning, leading to changes in behavior and communication.
Unlike other diseases, dementia can gradually diminish a person’s awareness of their condition, making it challenging for them to acknowledge their cognitive decline. This is why having the conversation early about end-of-life healthcare preferences ensures the person’s voice is heard and empowers them to maintain a sense of dignity and autonomy.
Step 1: Prepare
Caregivers may feel afraid to start conversations about end-of-life healthcare with their loved ones with dementia. It can be challenging for people with dementia to recognize their condition, leading to potential denials or lack of awareness, making the conversation more difficult.
Starting these conversations early can alleviate fears and uncertainties, as it allows caregivers to learn about the person’s values and needs, enabling them to make informed healthcare decisions on their behalf.
Some caregivers may delay starting the conversation, believing “it’s too soon” to discuss end-of-life care. However, early discussion provides opportunities to address concerns and build trust, creating a foundation for ongoing communication and decision-making as dementia progresses.
The truth is that this topic is always challenging, and even if you think it’s premature, starting the conversation early ensures that the person’s preferences are known and respected before critical decisions need to be made.
Caregivers can use a few strategies for starting conversations with a loved one living with dementia. The first strategy is acknowledging and addressing any fears that the person has about their condition. Second, caregivers should always be gentle, patient and compassionate during these conversations, allowing their loved ones to express their wishes thoughtfully and at their own pace. Lastly, caregivers can break the conversation into smaller, manageable parts. This lets individuals with dementia process the information and actively discuss their wishes.
Step 2: Talk
Caregivers need to understand the progression of dementia and tailor conversations accordingly. Dementia progresses differently for everyone, so caregivers must be flexible.
Caregivers can start conversations by asking open-ended questions, prompting the person to share their thoughts and values about their care. You can also discuss specific scenarios related to end-of-life care, which can help the person express their preferences more effectively.
If the person finds it challenging to answer questions directly, caregivers can ask yes/no questions or use specific examples, as we said before. Encourage the person to write down and record their wishes in a document so healthcare professionals and caregivers can reference their wishes.
Throughout the conversation, caregivers should assure the person that their wishes will be respected and honored, fostering a sense of security and trust in the decision-making process.
Step 3: Advocate
Caregivers play a crucial role as advocates for people with dementia, representing the person’s best interests and ensuring their values and wishes are known and respected by their healthcare team.
Advocating for your loved one with dementia involves communicating their preferences, medical history and care needs to their healthcare team. Caregivers should maintain open and regular conversations with the patient’s team and actively participate in care planning and decision-making processes.
You can also encourage other family members and close friends to engage in the advocacy process, ensuring additional support for the person with dementia.
Step 4: Learn from Others
Learning from others’ experiences can reduce feelings of isolation, providing comfort and guidance to caregivers facing similar challenges.
Family members who have cared for people with dementia might be able to share valuable experiences, such as cherishing simple joys and meaningful moments with the person. You can also look to social workers and other healthcare professionals for essential advice, experience, support groups and more.
Joining support groups or finding a community can help encourage caregivers to openly share their caregiving journey, challenges and emotions, thus creating a supportive and understanding environment. Caregivers are not alone on this journey. It’s crucial for them to find emotional support and resources.
“It’s important to keep talking – talk to anyone who can help the person you care for have a say in their care. The role you play in this person’s care is very important and will help them live their best possible life.”
– The Conversation Project, 2020, p. 15
As a caregiver, you play a crucial role in ensuring that your loved one with dementia has a say in their healthcare decisions.
By preparing yourself, initiating conversations, advocating for their preferences and learning from the experiences of others, you can make informed decisions that align with their wishes and provide compassionate care through the end-of-life.
Remember, these conversations are not just about healthcare decisions. They are opportunities to honor the person’s dignity, preferences and desires, ensuring they receive the care and support that truly matters to them.
The journey of caregiving can be challenging, but with proper preparation and open communication, you can navigate this path with greater understanding and compassion for your loved one with dementia.
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For more information about Alzheimer’s disease and other forms of dementia, visit alz.org.
The Conversation Project (2020). For Caregivers of People with Alzheimer’s or Other Forms of Dementia. Institute for Healthcare Improvement (IHI). https://theconversationproject.org/wp-content/uploads/2020/12/DementiaGuide.pdf
Alzheimer’s Association (2023). What Is Dementia? https://www.alz.org/alzheimers-dementia/what-is-dementia
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