Secrets to satisfied family members that providers should know

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Allan Vann, Ed.D
Allan Vann, Ed.D

In September 2013, I placed my wife, Clare, in the dementia unit of an assisted living residence. My main goal was twofold: I wanted her to be happy, and I wanted her to be in a safe and secure environment. 

One of the clearest lessons I've learned while being her advocate is that administrators who want to establish and maintain positive relationships with family caregivers of dementia residents must remain attentive to family caregiver concerns. 

Prior to placement, I did my “due diligence” by researching and visiting numerous facilities.  I wanted Clare, who has Alzheimer's disease, placed in a facility that I could rate as “A+” in terms of the caring and services provided. I also wanted her in a facility where she could “age in place.” In New York, all assisted living residences are licensed to provide “basic services,” but fewer than 20% of them also have special state certification to provide a higher level of care.

ALRs with “enhanced” or “special needs” certification require all aides to receive specialized training in how to work with dementia residents and these ALRs can provide a wider range of services for loved ones with dementia. For example, only ALRs with this advanced certification can serve residents who are wheelchair bound, totally incontinent, or in need of a very high level of individual care with their activities of daily living.

There were many reasons for choosing this particular ALR for Clare. During two pre-placement tours, I observed a caring staff interacting positively with residents. I also observed solid safety and security measures, and I noticed a full and varied daily activity schedule. The general ambience of the facility also impressed me as a bright, cheerful and clean facility with lots of natural lighting and many amenities for both residents and visitors.

Truthfully, Clare's ALR seems more like a nice hotel than an assisted living facility. Its many “amenities” make the time we spend together each day very enjoyable. Among those amenities are a “bistro” open 24 hours every day where Clare and I can enjoy free coffee, juice, fresh fruit and various snacks whenever I visit.

There are also several lounges with large TV sets where we can sit in relative privacy to talk or watch television together. And when I visit while Clare and members of her unit are watching a movie in their dedicated cinema room with movie theater-style, fixed seating, I often join her... after first stopping off at the free popcorn machine in the rear of the room! 

Clare's ALR has impressed me with its varied program of daily activities. She enjoys, and is happily engaged in, these activities each day, along with the many special entertainers and programs brought in each month.  Members in Clare's dementia unit also participate in a variety of monthly “field trips” ranging from museums and productions of musicals at local community theaters, to picnics at parks and at the beach.

Handling ‘glitches'
Fast forward almost a year and I can say that Clare is now living in an “A+” facility; however, I could not say that during her first 6 months... there were simply too many “glitches” not satisfactorily resolved, and too many emails and phone calls to ALR administrators who did not receive responses in a timely manner.

Issues that I thought were resolved continued to resurface. I could readily observe almost all staff members doing an A+ job each day, so I still felt that Clare was in an “A” rated facility.

However, all it takes is a few staff members giving less than their best to make any institution suffer. In my opinion, those few staff members needed to be more closely supervised and, if still not “on message” and not living up to what should always be very high standards and expectations, such staff members should have been terminated. 

In my situation, once I went to the executive director with concerns about various glitches that continued to resurface, the director acted promptly to deal with each situation. Operational procedures were changed in some areas, and performance expectations were reviewed with each staff member. New staff members were hired to remedy some situations, and some staff members were shifted to different areas of responsibility.  

ALR administrators who want to establish and maintain positive relationships with family caregivers of dementia residents must remain attentive to family caregiver concerns.  I was lucky: Top administration at Clare's facility wanted to hear my concerns and took very effective action to eliminate problems. To this day, anytime I have a concern I now speak with or email the executive director and receive immediate acknowledgment of my email. Action is then taken immediately or an explanation is provided for why action cannot be taken.

The door to the top executive is always open to me. I appreciate that enormously, and administration has truly gone “above and beyond” to try to make Clare's life as happy as possible — and to make my life easier as her caregiver/advocate.

Suggestions for facility managers
Institutional caregivers in an ALR setting must promote recognition of a “we” relationship with family caregivers. Upon ALR placement, family caregivers relinquish their roles as primary caregivers and entrust that role to ALR staff.

As institutional caregivers, however, they must always remember that some family caregivers may want to remain actively involved with their loved one's care.

Here are five suggestions for ALR managers to help promote that “we” relationship.

1. Inform would-be family caregivers and residents about your certification. If your facility is able to offer enhanced care to dementia residents, place that fact prominently on your website and promote that fact during your meetings with prospective residents and their caregivers. 

Explain what your facility can provide that other nearby facilities may be unable to provide. When doing my initial search of facilities, I was totally unaware of the differences in certification and that turned out to be the most critical point of information. And, just as important, take the necessary time to explain exactly what services and levels of care such certification does or does not allow you to provide. Family caregivers should have this information prior to placement to avoid misunderstandings after placement.

2. Communicate effectively with family caregivers. Anytime there are changes in a resident's daily routine, or anytime there are significant health or behavioral declines, family caregivers should be informed. For example, family caregivers should be notified anytime there is a significant change in a resident's sleeping or eating pattern.

One relatively easy way for managers to communicate effectively with family caregivers when such changes develop is to do something similar to what many teachers do for parents. Teachers often send home weekly check-off sheets for children who have behavioral or work habit issues. The days of the week are listed in one column, with a few columns next to each day for placing a check mark to indicate good, fair, poor, etc. There may also be space for comments. Teachers communicate effectively with parents who can then follow up if more information is requested. Facility managers should have similar simple check-off forms available for resident caregivers who want to be kept informed when their loved one is having issues with sleep, food, behavior, etc.

Family caregivers also should be informed anytime there are significant changes in personnel working with residents. New aides have been hired periodically and I see new faces in Clare's dementia unit, but family caregivers were never given a list of their names. Institutional caregivers must understand that family caregivers may want such information. I certainly want to at least know the names of people responsible for my wife's care on a daily basis.

Not sharing such information can result in unnecessary stress and anxiety for family caregivers, as well as disappointment by this lack of communication. I want to know the names of people interacting with my wife.

The institutional goal should be preemptive communication. Should there be a glitch, inform the family caregiver immediately. Don't wait for the caregiver to raise that issue with you or your staff. Should there be a significant program or staffing change, inform the family caregiver. Should there be significant changes in resident behavior or health, inform the family caregiver. Institutional caregivers should provide such information routinely and in a timely manner.

3. Hold informal get-togethers with family caregivers. Provide coffee and cookies and invite all family caregivers to meet with you as a group, and possibly even with your top administrative staff, a few times each year. These do not have to be lengthy meetings. Informal settings will allow you to inform family caregivers about any significant changes that are coming or have recently been implemented.

Managers can address anticipated concerns, highlight institutional or staff accomplishments, and receive valuable feedback that might not otherwise be shared with you. Such informal meetings may even result in suggestions from family caregivers that can help you improve your facility's services to residents and/or family caregivers.

Informal meetings also can encourage another important aspect of that “we” relationship just by providing a time for family caregivers to meet each other. Some but not all family caregivers probably are or were in support groups. Family caregiver meetings with administrators may provide an opportunity for family caregivers to get to know each other and learn from each other. An ad hoc support group may form.

Meetings also would enable family caregivers to speak with each other and learn from each other about important ALR-related issues they are facing, what services other caregivers are using to hire private aides, how they are resolving medication issues, if anyone can recommend a neurologist or geriatric psychiatrist, etc.

4. Issue a handbook or informative monthly newsletter. Whereas facilities often provide promotional material and monthly calendars of events and daily activities, few ALRs provide family caregivers with any written material explaining basic procedures, names of staff members, and phone numbers or email addresses for administrative staff. A list of the names of aides that work with that caregiver's loved one should also be provided.

Most ALRS provide name badges for all personnel, but badges often have names written in such small lettering that one would have to violate an aide's “personal space” to get close enough to read their names. Often, aides do not wear their badges or they are covered up by other articles of clothing. A list of their names would be helpful for family caregivers to know who is working with their loved ones and how to reach various supervisors by phone or email.

A handbook should also contain explanations of the care your facility can provide, following up on information presented prior to admission. I never received any information about the individual assistance I should expect for Clare, and this has led to several mismatches of expectations. I had expected a higher level of personal care and attention since Clare's ALR has advanced certification for providing care to loved ones with Alzheimer's. But I had to be told several times that some of the care I was expecting cannot be provided due to insufficient training of personnel, or that such care could be provided only in a nursing home setting and not in an ALR.

An alternative to a handbook would be a monthly newsletter with periodic reminders of such care standards, along with a list of staff and how to reach supervisors. This information would go a long way toward helping to forge that “we” relationship between institutional and family caregivers.

5. Examine your facility from a family caregiver's perspective. Instruct your administrators to try to place themselves in the shoes of your family caregivers. Are family caregivers coming to visit residents in locked units having to wait for several minutes until an aide unlocks the door? If so, would providing remote openers allow aides to unlock doors more quickly?

Is the music volume on your hall speakers so loud in some areas that it disturbs family caregivers meeting with their loved ones in various places? If so, can those speakers be made inoperative or have their volume adjusted to avoid interfering with residents and family caregivers having discussions or watching TV?

Are outside chairs, tables, and benches regularly cleaned of bird droppings and pollen? Are seat cushions being set out each morning and brought in only if rain is imminent? Are all public rest rooms cleaned on a scheduled basis? Are spills cleaned up immediately? Are coffee or juice machines repaired quickly? ALR managers or their designees must walk their facilities, inside and out, on a daily basis to determine if any such issues need to be addressed.

Viewing family caregivers as advocates for their loved ones
Admittedly, Clare and I do not present the typical profile of an ALR dementia unit resident and family caregiver. Clare was placed just months after turning 67 and is much younger than the other dementia residents. Few ALRs have patients that young. Except for 3 days when I was hospitalized for a surgical procedure, I have visited with Clare every single day since she was placed.

Few ALRs have experience with spouses of dementia residents visiting on a daily basis. I am with Clare for at least four hours each day. I recognize that my actions sometimes disrupt ALR routines. For example, if I sign Clare out at 3 p.m. to go to the beach and then to a restaurant and not return until 7 p.m., she is not there when evening medications are given. When I bring her back, an aide must then take the time to give her medications.

I probably ring the buzzer for an aide to come to unlock the dementia unit doors more than any other family caregiver. During my daily visits, I probably observe ALR personnel and operational procedures a lot more in one day than most family caregivers do in a month.

When I observe situations where, in my opinion, aides or supervisors are not doing their jobs properly, I tell top management. Some aides and supervisors undoubtedly see me as a complainer. That is one way to view me, I suppose.  However, I see myself as an advocate. I've gone from being Clare's 24/7 caregiver at home to a part-time caregiver and full-time advocate for her in the ALR.

I do not see myself in an adversarial position with ALR management. To the contrary, I am proud to be able to say that top management at Clare's ALR is as interested as I am in having her ALR rated “A+” each and every day.

The executive director is outstanding, as is one subordinate administrator, and I couldn't ask for more responsive top management. All institutional caregivers should seek as they do to work closely with family caregivers and advocates to further our common mission — to provide the best care possible for each resident.

Allan S. Vann, Ed. D., has written numerous articles about caregiving after his wife was diagnosed with early onset Alzheimer's disease in 2009. A retired school principal, he maintains a personal blog as well.

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