Working with Proxies

Research supports the positive impact of having family and friends (“proxies”) involved in care. They can provide social support for a resident even after transition to a nursing home, and can serve as advocates for individualized care planning. When a resident cannot participate in an interview due to cognitive or communication limitations, a proxy can respond to Preferences for Everyday Living Inventory (PELI) questions, helping to represent the resident’s preferences and level of satisfaction.

Step 1: Start with the Resident

Individuals with mild to moderate dementia can still report on their preferences, reliably and consistently. Hard cut-off scores may not always be the best indicator of a person’s ability to convey their preferences. We recommend approaching the long-stay resident three separate times, on different days, before determining that the PELI interview cannot be completed and a proxy is needed.

Step 2: Seek a Proxy who knows the Resident & can Answer Questions

If a resident cannot participate in a PELI interview, it is best to interview a family member or close friend who knows his or her preferences well and can speak on the resident’s behalf. This person – the proxy – could be the Power of Attorney or other responsible party, but could also be a family member or friend who visits the resident most often.

Step 3: Steps to Success

• Decide how you will collect the information. Interviews can take place in person or via phone, video chat, email, postal mail, or a combination.
• If in person, designate an interview location that is quiet and private. Include the resident in the room if possible.
• Determine the staff member who will perform proxy interviews and coordinate with the proxy.
• Schedule the interview at a time convenient for the proxy. (See PELI Interview Tips sheet.)

Step 4:         Tips for Effectively Engaging Proxies

Invite family members or friends to participate by letter, email, phone call or video chat. During the interview:

• Ask the proxy to answer as though the resident has no barriers to pursuing each preference.
• Stress that you are seeking what the proxy thinks the resident would prefer, not what the proxy prefers.
• The proxy voice is not a replacement for the resident’s voice; it is a complement in the care planning process
• Family/friends can be a great resource to discover interests that can be used to create unique and individually tailored interventions.

Sometimes family and close friends are discouraged by their loved one’s condition and believe he or she can no longer pursue past interests. Help the family/friend understand how their input leads to preference-based person-centered goals of care. Remind the proxy that you would like to understand the resident’s preferences so that the care team can devise ways to help the resident fulfill them. Consider letting the proxy know that “If we know what your loved one used to like, perhaps we can adapt the activity so that she can continue to participate and enjoy it.”

If the proxy has difficulty answering preference questions, consider simplifying the response options to Important or Not Important, rather than using all five PELI choices (Very Important, Somewhat Important, Not Very Important, Not Important at All, or Important, But Can’t Do, No Choice).  Encourage the proxy to attend a care planning session, either by phone or in person. When proxies do not attend, track the reasons and engage in a Plan Do Study Act (PDSA) cycle to address causes for non-attendance.

What if there is no family or close friend proxy?

If no proxy is available, the direct care workers’ experiences and observations may provide insight into the resident’s preferences. For example, over several days, staff may be able to determine preferences for daily patterns by being attentive and taking notes when residents are naturally rising or wanting to go to bed. Give new residents a few weeks to get into a routine. Identify a staff member who will use direct care workers’ observations to inform care plans.