Project Update: Summary of Themes from Consultations on Engaging People Living with Dementia in Decision-Making

Project Update: Summary of Themes from Consultations on Engaging People Living with Dementia in Decision-Making

October 31, 2022

BY Jess Fehrenbacher

Introduction

The Canadian Centre for Elder Law (CCEL) is collaborating on a three-year project. Our goal is to change how healthcare decision-making is approached so that the rights of people living with dementia are respected and they participate as much as possible in the decisions that matter to them. The need for the project was identified in a previous project on Health Care Consent. For more project background, see our project webpage. View this short PowerPoint presentation for a summary of some of the themes of this project.

As part of this project, the Canadian Centre for Elder Law (CCEL) hosted a series of consultations with people living with dementia, people with disabilities, their family care partners (CPs), and health care providers. The purpose was to learn about what supports and limits the participation of people living with dementia (PLWD) in decision-making. This blog post summarizes what we heard from the 190 individuals we talked with. The five themes we heard were types of decisions, challenges and barriers, strategies, solutions, and cultural context in relation to decision-making.

1. Types of decisions

“I think the misconception is that people living with dementia can’t make their own decisions, I think we sometimes take away all decision making.”

– health care administrator

Although we heard from PLWD the importance of being involved in decision-making, there were mixed responses on the level of involvement PLWD had in decisions. For some families, family care partners made all the decisions. In other families, PLWDs were fully involved, partially involved, or not involved in decision-making. Some PLWDs wanted to be fully involved in certain decisions but were okay to leave other decisions to family members.

Participants shared about 5 main categories of decisions:

• Financial and Legal
• Health care
• Lifestyle (housing, work, hobbies, etc.)
• Everyday (schedule, relationships, food, etc.)
• Participating in research

2. Challenges and Barriers

2.1 System challenges:

“I think as a person I know my abilities, I know who I am and I know what I stand for I know what I can and can’t do. And for me that is ultimately what helps factor into making a decision.”

– person living with dementia

• Lack of information and understanding of tools and laws
• Lack of understanding of dementia and rights
• Stigma, paternalism, and assumptions about people living with dementia
• Rushed pace of the medical environment
• Confusion on how to apply laws to practice
• Language and cultural barriers
• Emphasis on managing risk over self-determination

2.2 Personal challenges:

• Anxiety about further decline
• Doubting own capacity to make decisions
• Lack of support and trust in decision making
• Lack of insight into decline
• Feeling left out of decisions

2.3 Other challenges

• Cultural/language barriers
• Challenges in communication and understanding
• Fluctuation of dementia
• Care partner burnout

3. Strategies

“Tailor your communication strategy as needed and it depends on, you know, some people with very early stage dementia you may not tailor anything, right, versus people who are very late stages you’re goanna change completely your approach and maybe you would adjust your language depending on that but its not a universal, you really need to know where they’re at”

– health care administrator 

3.1 Communications strategies

• Tailor communication strategy as needed depending on person and stage/type of dementia:
  • Meet their ability to process information
  • Maximize communication (pocket talker, recording, writing things down, etc.)
  • Simple language
  • Visuals
  • Limited options
  • Two-way communication
  • Ask questions to further understanding
  • Recognize all forms of communication (including non-verbal)
  • Use third person
  • Choose the best time of day
  • Go slow and take your time
  • Build trust / rapport

3.2 Person-centered strategies

• Acting in the best interest of PLWD
• Prioritizing decisions to involve PLWD
• Being guided in decisions by sense of self, spiritual / cultural beliefs
• Self-advocacy, positive self-talk, time thinking things through

“As long as they are still capable, focusing on them as the centre point of decision-making. If they want to involve family, that’s up to them.”

– geriatric psychiatrist

3.3 System strategies

• Knowing how to navigate the system
• Finding more information
• Understanding the dynamics and limitations of legal tools
• Advocating

3.4 Interpersonal strategies

• The use of boundaries
• Involving others in decision-making: using a team approach
  • addressing differing opinions

3.5 Planning:

• Planning ahead (ie. Advance conversations, advance care planning)

4. Solutions

“The important part in all of that is to keep listening to the actual people involved to keep giving them the space to advocate for themselves and have agency for themselves.”

– Indigenous consultant

4.1 Advocacy

• Represent the voice of PLWD (leadership / staff / care partners)
• Personhood – advocate for the rights of PLWD
• Recognizing dementia as a disability (accommodation)

4.2 Systems change

• Improved information access
• Clarity on how to implement laws
• Increased oversight / monitoring / accountability

4.3 Training

• Institutionalized training / mandatory curriculum
• Mentorship / on-the-job training

“A lot of times that involves, you know, partnering and understanding their caregiver or their family situation or their work situation and, and taking the time to invest in those, those relationships so that they’re meaningful and important.”

– academic

4.4 Context of Care

• Clarity on incapability assessments, risk, and liability
• More time for consultations with PLWD

4.5 Tool development

• Place of delivery:
  • Through community organizations
  • Through healthcare system networks and educators
  • Through live trainings/workshops
  • Through social media / videos on online platforms
• Tool suggested components:
  • using stories/scenarios in training (problem-solving)
  • addressing the process of assessing incapacity
  • explaining misconceptions (ie. the law on DM)
  • clarifying substitute decision-making authority/limits
  • stages of dementia related to decision-making
  • communication strategies for DM in later stages
  • values: person-centred / respect of inherent dignity
  • cultural considerations
  • navigating risk and liability

• Method of delivery
  • Beneficial for doctors to champion resources for doctors
  • Have a point-of-contact for any follow-up questions about tools/resources
  • public service announcements, newsletters, brochures, booklets
  • short videos on social media / interactive modules
  • an app with modules / scenarios
  • checklists and infographics, posters with QR codes for more info
  • webinars/ training series / grand rounds

5. Cultural, Family, and Individual Context

“For some Chinese seniors, they may be reluctant to participate in future care planning as they think that it may bring bad luck. It is a taboo to talk about future care plan in Chinese tradition.”

– Chinese family care partner

We consulted with individuals from a variety of different family and cultural backgrounds in BC. We worked with partners to host conversations in Cantonese and Punjabi. We also consulted with Indigenous families living on and off reserve. While every individual had different perspectives to share, some common themes we heard were:

• Individuals’ personality, personal history, and background affect their decision-making needs and preferences
• Family dynamics affect decision-making. Family decision-making norms may contradict health care policies and procedures.
• The legacy of residential schools and colonization impact dementia symptoms and care
• Cultural stigma and shame regarding dementia and racial discrimination can impact seeking dementia support  
• There are varied knowledge and understandings about dementia and decision-making processes
• The lack of cultural and language-appropriate resources available impacts the ability of PLWD to be involved in decision-making. Family members who speak English may make more decisions on a person’s behalf as a result.
• The lack of cultural and language-appropriate long-term care facilities makes the decision to go into a facility more difficult. Family values of caring for elders as a family can also make the decision about LTC placement more challenging.  
• Patients may not trust or understand healthcare providers due to differences in culture, needs, beliefs, language, and communication style

“Some traumatic events, you know, they may lapse back to a time maybe when they were in residential school or in some sort of, you know, very awful situation…understand the history…broadly speaking the Canadian history of what has happened with indigenous people in this country but also get to know the history of the individual and their own personal history so they can work together as and build a care plan…”

– Elder care practice consultant

Helpful approaches for health care providers:

• Practice curiosity with each person and family and don’t assume you know their culture or how they make decisions.
• Be aware of cultural deference to doctor’s opinion.
• Secure translators and resources in people’s preferred language when possible
• Be mindful of using language that connects to cultural understandings of dementia (for example a family may prefer “memory loss” to “dementia”)

Feedback on Summary Findings

We held a virtual event in September 2022 to hear feedback from consultation participants on the summary findings. 95% of the participants who responded to survey feedback said that the summary findings reflected their perspectives on the topic. The only change participants suggested to the summary findings report was to increase the use of plain language. We heard from participants that they wanted to see principles of decision-making and practical tips for supporting the decision-making of PLWD.   

Support for this project

We would like to thank our three key partners, the Alzheimer Society of BC, Family Caregivers of BC, and the Centre for Research on Personhood in Dementia for their ongoing support of the project as well as the many other organizations and individuals who helped us to facilitate the consultations.

Next Steps

Want to stay updated on next steps? Watch our project page, follow us on Twitter, or subscribe to our newsletter for regular updates on this project. You can also contact Krista at [email protected] with any questions or to get involved.