How to coordinate and make decisions in the family

Discussing the care and financial needs of a loved one with dementia with siblings or other relatives can be necessary, depending on how many family caregivers are involved and to what extent. Getting aligned on care and financial considerations can help prevent unnecessary disagreements, and even worse, legal action in the future. It's important to approach the conversation with empathy, clarity, and openness. Here’s a discussion guide with topics, suggested questions, and language to facilitate a constructive and supportive dialogue:

1. Understanding the Situation - Assessing the current state and future progression of dementia

• “What is our understanding of [loved one’s name]'s current medical condition and needs?”

• “Have we consulted with healthcare professionals about what to expect in the coming months or years?”

2. Caregiving Options and Preferences - Exploring care options that align with the loved one’s needs and wishes

• “What kind of care do we think is best for [loved one’s name] at this stage?”

• “Have we considered what [loved one’s name] would have wanted in terms of care and living arrangements?”

3. Division of Responsibilities - Assigning caregiving and decision-making responsibilities

• The person who spends the most time taking care of your loved one with dementia has deep insights and should be listened to. Sometimes they don’t have the perspective of how things have progressed over time, but they most likely know the day to day needs and preferences of your loved one quite well.

  • “How can we divide caregiving responsibilities in a way that works for everyone?”

  • “Who is in the best position to manage medical appointments or handle day-to-day care?”

4. Financial Planning - Assessing and planning for the financial aspects of care

• “What are the estimated costs of care, and how can we plan for these expenses?”

• “Have we looked into [loved one’s name]'s insurance, benefits, and any other financial resources available?”

5. Legal and Health Care Directives - Understanding and organizing legal and health care directives

• “Do we have access to [loved one’s name]'s legal documents like a will, power of attorney, and healthcare directives?”

• “Should we consult a legal professional to ensure all necessary documents are in place and up-to-date?”

6. Communication and Updates - Establishing a system for ongoing communication and updates

• “How will we keep each other updated about [loved one’s name]'s condition and any changes in care needs?”

• “Is it beneficial to schedule regular family meetings to discuss updates and concerns?”

7. Support for Caregivers - Addressing the need for support and respite for caregivers

• “What support do our caregivers need, and how can we provide it?”

• “Should we consider professional respite care to give our family caregivers a break?”

8. Emergency Planning - Preparing for potential emergencies or sudden changes

• “What is our plan in case of a medical or caregiving emergency?”

• “Do we have a list of emergency contacts and important medical information readily available?”

9. Ensuring Quality of Life - Maintaining the loved one’s quality of life and dignity

• “What can we do to ensure [loved one’s name] continues to enjoy life and feel loved and valued?”

• “Are there specific activities or routines that are important for [loved one’s name]'s happiness and well-being?”

Suggested Language for Discussion:

• “Let’s work together to find the best solutions for [loved one’s name].”

• •“It’s important that we all share our thoughts and listen to each other with an open mind.”

• “We all want what’s best for [loved one’s name], so let’s try to find a balance that works for everyone.”

Remember, these discussions can be emotional and challenging. It’s important to approach them with patience, understanding, and a willingness to compromise and collaborate.

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