This tip sheet provides guidance on how to gather input from family members and friends to personalize care for older adults — including those who are living with dementia or communication challenges. Use this information to build positive relationships and communication with family members and close friends: they are often essential care partners for older adults receiving long-term services and supports.
The guidance in this tip sheet is grounded in clinical experience in LTSS settings, as well as research into the benefits of forming collaborative, trusting relationships between staff and family members or close friends, in line with an older adult’s needs and preferences.1 Read on to learn ways to navigate complicated conversations plus gain insights about why these recommended approaches work so well.
1Hoek, L., van Haastregt, J., de Vries, E, Backhaus, R., Hamers, J., & Verbeek, H. 2021. Partnerships in nursing homes: How do family caregivers of residents with dementia perceive collaboration with staff?
Dementia, 20(5), 1631-1648. https://journals.sagepub.com/doi/10.1177/1471301220962235
Best practices for obtaining input from family and friends:
- When you welcome a new resident to your community, ask: “How important is it to you to have family or a close friend involved in discussions about your care?” If the resident says this is an important preference, ask for names and contact information for each individual. Note that this question is part of the MDS Admission assessment for nursing home residents, Question F0440 (Section F).
- Add the names of individuals whom the resident wants involved to their chart. Follow your community’s policies for recording this information on a face sheet, electronic health record, or other documentation procedures. This step protects the resident’s privacy and helps staff communicate with the appropriate individuals.
- Schedule a care conference for the resident. Invite designated family and friends in-person, by phone, email or U.S. mail. Invite anyone who can’t attend in-person to join the care conference by phone or Zoom, MS Teams, WebEx, etc. As facilitators for these care conferences, care providers should encourage the resident, their family and friends to ask questions and express thoughts.
- Keep the lines of communication open to build trusting relationships with the resident’s support system. Include designated family members and friends in care discussions at care conferences and when other needs arise – for instance when the resident has appointments, new or changed orders, or a change in status. In addition to contacting designated family and friends to report incidents, share positive reports such as gains made in therapy or participation in community activities.
- Remember that guidance from family or close friends in care discussions can strengthen the care planning process, but should not replace the resident’s voice.
- To obtain more insights for the care plan, consider asking additional questions from the Preferences for Everyday Living Inventory (PELI) interview. The PELI asks older adults about their preferences for social contact, leisure activities, living environment and daily routine. The tool also explores who the resident would like to involve in their care; which topics they would like to discuss; and if there anyone the resident would not like involved in their care discussions.
- Note that the PELI is designed for older adults of all abilities, including those living with dementia. Also, family members and close friends, who know the resident well, can provide preference information if the older adult cannot respond to questions independently. The last section of provides links to PELI questionnaires, as well as tip sheets, webinars and videos that explain how to interview older adults with dementia, or their family members and close friends as needed.
- The PELI lays the foundation for care plans and service delivery that honor each individual’s most important preferences. You can select questions, from among many, that help meet your organization’s goals.
Talking points for effective care conferences:
- Redirect the care conference and related conversations to the resident’s preferences using positive language:
For the family member or friend who repeats a concern over and over…
“You’ve mentioned [concern] a few times. We’d like to understand whether that is an important preference of (resident’s name).”
[This validates that you hear their concern and redirects the focus to the resident’s preferences].
- If YES, say that the team will try to honor that preference and will add this to the care plan. “Thank you for letting us know. Understanding this important preference helps us make sure we provide (resident’s name) the best care. We will add that to the care plan so everyone knows. What other important preferences should we add to the care plan?”
- If NO, gently remind the family member or friend to advocate for the care that the resident would prefer. “We can try that and see how (resident’s name) responds. However, let’s also focus on what they would prefer. We want to design the plan of care around their most important likes and dislikes.”
- Get the conversation back on track:
When a family member or friend runs through a laundry list of concerns…
“You’ve brought up lots of great questions and concerns. But we only have a short amount of time together and our team wants to be sure we focus on preferences for (resident’s) care plan. We can have each department follow-up with you after this meeting to make sure each point is addressed. During our remaining time, how about if we discuss (resident’s name’s) most important preferences?”
When a family member or friend shares conflicting preferences…
“You’ve mentioned you believe [X] should be done. That is a good idea. However, in the past (resident’s name) has expressed [Y] as their preference. We value your input. But the care team needs to focus on and honor the resident’s preference.”
When a family member or friend talks over the resident…
“We really appreciate you joining us for this conversation. Your input is extremely valuable. (Resident’s name), would you like to share your thoughts? Can you tell us what is most important to you?”
When a family member or friend’s view of preferences is too narrow…
“So far, we’ve touched on personal care preferences and medical needs (for instance). We also want to know (resident’s) recreational and social preferences. Tell us what types of experiences help them feel happy, calm, interested and socially connected. Your input will help us support a more well-rounded experience for (resident) that supports their wellbeing.”
When family members or friends are reluctant to focus on seemingly ‘non-essential’ needs…
“In the press of everyday life, we often try to complete as many tasks as quickly as possible. But this kind of open-ended conversation can really pay off. Let’s take some time to focus on how we can support (resident’s) happiness by hearing your insights about their preferences and priorities. Your input can support our work to try to improve (resident’s) quality of life.”
- Reflect on the resident’s emotional wellbeing:
For the resident experiencing emotional distress…
“We’ve noticed that (resident’s name) has been a bit down lately. Do you know what has made them feel better in the past? Could you share the types of experiences they seem to enjoy the most, that they tend to find soothing, and how they typically like to spend their day?”
For the resident experiencing behavioral distress…
“We’ve noticed that (resident’s name) has increasingly been doing [X]. Can you share what kinds of interactions and experiences they find calming, and how they prefer to spend their day? Could you recommend ways we could try to help them feel happier and more comfortable?”
For the resident exhibiting apathy…
“Lately (resident’s name) has not been showing much interest in activities. Do you know what their favorite activity is or what time of day they tend to feel best and most apt to engage? Can you share any other important preferences and interests (resident’s name) has that we could support to better engage their interest and involvement?”
- Use strength-based language:
Use a positive, strength-based approach to direct the care conference and related conversations. Rather than asking what makes (resident) upset, ask what makes (resident) feel good?
Why these approaches work well
Family and friends are important, often essential advocates for a resident. Designated family members and friends can help smooth the transition for individuals receiving long-term services and supports. They can help care providers assure that a resident’s preferences and wishes are respected during their adjustment to a new living environment, when preferences change, and when a resident experiences cognitive and/or physical decline.
Family and friends can support compliance with resident rights to be involved in the care planning process. Updated federal regulations [483.10(c)(2)] emphasize involving the resident in the care planning process – a person-centered approach to care that requires listening to and honoring the resident’s voice. The regulations extend resident’s rights in care planning to designated family members and friends who are approved to participate in care discussions. Their participation in care discussions can help a resident feel comfortable and secure sharing their feelings and needs.
Family and friends can strengthen trauma-informed care. Care providers are responsible for community-wide practices to help identify and avoid possible trauma. Federal regulations now include recognizing that all people are potentially affected by trauma at some point in their lives. When residents decide who they would like involved in their care discussions, this can help communities identify support systems for residents; this can also help to detect possible relationship strains with individuals who are identified as not welcome to participate in care discussions.
Family and friends can support relationships with residents with dementia. Individuals living with dementia may find it challenging to communicate their preferences for care. Allowing close family and friends to be involved in care discussions helps to uphold their preferences and support their involvement in the care planning process.
Strengthen pandemic-era relationships among caregivers, residents, families and friends. As pandemic era health restrictions ease and we welcome families and friends back into our communities, including them in care discussions can strengthen relationships and trust with caregivers. If your community is not currently able to welcome in-person visitors, continue to stay in touch using virtual meetings or phone calls.
Some residents’ relationships with family and friends have been severely impacted by COVID-19-related visitor restrictions. Yet their guidance, insights, and support (in person or virtually) are more important than ever for residents who have experienced isolation, withdrawal and apathy due to limited communal dining and activities.
For more resources on engaging family and friends in care assessment and planning, see:
- Preference Assessment Questionnaire – Preferences for Everyday Living Inventory
- Preference Assessment app – ComPASS-16
Engaging Family and Friends in Preference Assessment
- Customizable Brochure for Residents and Families – Why Preferences Matter
- Tip Sheet – Working with Proxies
- Training Video – Engaging Family and Friends to Assess Preferences
- Webinar – When You Can’t Ask the Resident: Practice Guidelines for Asking Proxies About Resident Preferences
- Training – Facilitator Guide: Engaging Family and Friends to Assess Preferences
- Webinar — Sticky Wicket or Cakewalk? Involving a Resident’s Loved Ones in Discussions About Care
Care Planning and Delivery
- Tip Sheet – Integrating Preferences Into Care Plans
- Training Video – Integrating Preferences Into Care Planning
- Webinar – Integrating Preferences Into Care Planning
- Individualized Positive Psychosocial Intervention Quality Improvement Project
Thanks to generous grant funding, Preference Based Living Resources are available at no charge.