Encouraging Families to Become "Partners in Care"

When a resident is admitted to a nursing facility, the resident's family, in effect, is being admitted as well. Facilities that have made special efforts to encourage families to become "partners in care" have seen the resultant benefits of increased customer satisfaction, improved resident care, and an enhanced community reputation. Many Illinois Council nursing homes have developed a variety of creative outreach programs to provide families quality information, useful community resources, open avenues of communication, and needed emotional support.

Placing a loved one in a nursing home can be extremely difficult for families, as they sometimes feel that they are breaking an implied sacred promise to care for their loved ones themselves. Families face a deluge of difficult feelings during the admissions process including guilt, anger, and frustration. These feelings can easily manifest themselves into challenges for the nursing home staff, who may face unnecessary criticism or outward hostility as a result of the families' own internal struggles.

Seeing a loved one deteriorate in mind, body, and spirit is extremely hard for families, many who will face an extended period of grieving. They need the support of nursing home staff in not only getting the best care for their loved one, but in taking care of themselves as well. Making special efforts to include families in facility life is an important goal that should be upheld by every nursing facility in its quest to create an environment of caring, compassion, and dignity.

The following are some examples of the many ways that Illinois Council facilities are encouraging families to become "partners in care." All of these programs demonstrate the recognition of the family member as an integral part of the facility team:

Family Education Meetings

St. James Manor

Len Yerkes

Social Service Director

Families benefit from having educational opportunities to learn about long-term care and health-related issues. St. James Manor hosts quarterly family education meetings that feature such topics as healthy eating, estate planning, cultural diversity, hospice care, elder abuse, and pharmacy services. Families have also seen two videos that have proven to be both helpful and popular: "The Long Goodbye" and "Complaints of a Dutiful Daughter." Len points out that the families have appreciated having the chance to meet together and hear expert speakers address a variety of useful subjects.

In-House Case Manager for Families

St. James Manor

Len Yerkes

Social Service Director

At St. James Manor, there is one nurse who has been specially designated to serve as an in-house case manager, communicating clinical information to families and serving as their liaison. This nurse assists families with such challenging areas as making a decision to use tube feeding or having a resident be seen by a hospice agency. The case manager assists with assessments, communicates with staff at hospitals, and works hand-in-hand with the interdisciplinary team in developing a plan of care. As Len explains, "The families have appreciated having someone who can make appointments with them and communicate important medical information in easy-to-understand terms."

New Family Orientation Program

Regency Healthcare and Rehabilitation Centre

Kathy Clyde

Director of Social Services

Regency hosts an orientation program for families on a monthly basis. Part of the program involves viewing a helpful video entitled "No Easy Answer: Moving Beyond the Guilt" which addresses the emotional challenges that families face when placing a loved one in a nursing home. Staff members address such practical areas as departmental functions, the Health Care Surrogate Act, Public Aid, how to address grievances, hospice care, making successful visits, trust fund and the activity program. They go over a "family packet" that has a variety of helpful pieces of information. Kathy states that the program has been very successful in enabling families to better adjust to facility life.

Spousal Support Group

Regency Healthcare and Rehabilitation Centre

Kathy Clyde

Director of Social Services

While several Illinois facilities host Alzheimer's support groups, Regency has an additional group specifically for the spouses of residents with dementia. The members of this group talk about those concerns that are unique and meaningful to them, including loss of a life partner, feeling alone, taking on additional responsibilities, financial challenges, and dealing with the grieving process. "We have found that there is a real need for this kind of specialized group," Kathy explains. "The spouses enjoy sharing their experiences, providing emotional support, and building a sense of camaraderie."

Family Survival Handbook

The Wealshire,

Carly Hellen,

Director of Alzheimer's Care

Family members have worked together with the staff at The Wealshire to create a "Family Survival Handbook," containing answers to questions that families have commonly asked as they have moved their loved ones into the facility. The Family Survival Handbook is similar to a family orientation program, except that the information is available immediately and can be reviewed again and again. The handbook includes several chapters covering the Alzheimer's disease process, living at The Wealshire, and components of resident care.

Life Story Books

The Wealshire

Carly Hellen

Director of Alzheimer's Care

Upon admitting a loved one at The Wealshire, family members are encouraged to create a Life Story Book" for the new resident. This booklet can contain a variety of items such as photographs, certificates, awards, religious items, military recognition, and other meaningful mementos. They provide a source of conversation and connection for visiting families. In addition, staff members are able to review the books and learn more about the residents they serve. Just putting the books together can be a therapeutic process for families, Carly points out. "Some families haven't had the best of relationships and now Mom has dementia," she explains. "But if you can get together with your brothers and sisters and put together a life story book, you begin to discuss different things, so it brings a lot of healing to the family too."

Private Dining Program for Families

Wauconda HealthCare Centre

Amy Hyre

Social Services Director

Throughout their lives, families have celebrated meaningful events by enjoying a special meal together around the dining room table. Wauconda HealthCare Centre has its own private dining room that families can utilize in sharing special occasions with their loved ones. In this elegant setting, residents and family members can recognize birthdays, anniversaries, showers, and religious holidays. There is a small kitchen area where families can heat their food and make their final preparations. "Our private dining room has been used very often," Amy states. "Our residents have appreciated having a private area where they can partake in celebrations with their loved ones. Our program allows these residents to serve as `hosts' and continue to enjoy the art of entertaining."

Monthly Family Meetings with Psychologist

Meadowbrook Manor of Bolingbrook Victoria Dzierzbicki

Social Service Director

Many family members face a tremendous amount of guilt, frustration, and fear in placing a loved one in a nursing facility. They may benefit from having opportunities to discuss the emotional issues that they are facing and to receive helpful advice and support. On a monthly basis, Meadow-brook Manor of Bolingbrook sponsors family meetings with Dr. David Tossig, a psychologist who offers counseling and advice to families who are having a difficult time with nursing home adjustment. This family service is also part of the facility's "Comfort Care" program, a comprehensive initiative to provide quality end-of-life care to facility residents. Dr. Tossig uses this monthly forum to help families confront the emotional challenges of the grieving process.

E-Mail Program for Families Westmont Convalescent Center

Pat Hiscox, Activity Director

Dawn King, Assistant Activity Director

Westmont Convalescent Center has its own computer area where residents can write letters, play games, and do facility projects on donated personal computers. Some of the residents have their own electronic mail accounts whereby they can send and receive letters from their family members. The e-mail program has enabled those family members who live far away, in such locations as California, Maine, or Germany, to send letters quickly and easily to their loved ones. In one instance, a resident received a photograph of her new great-granddaughter from the hospital on the day she was born via the facility e-mail! Pat points out that the program has been particularly popular with younger family members, such as teenagers and twenty-somethings, who are part of a generation which has become accustomed to communicating with relatives and friends over the computer.

Family Projects: Quilt Displays and Cookbook of Treasured Recipes Plaza Terrace Nursing Center

Kathleen Grevan

Director of Community Relations

A successful strategy for encouraging families to become more involved in facility life is to have them work on projects together. A rewarding family endeavor at Plaza Terrace Nursing Center was the creation of two family quilts. Each family member was given a quilt square that they decorate as they pleased. Some squares included resident pictures, while others were stenciled or included iron-on decorations. The squares were sewn together to form a wall hanging for each of the two buildings on campus, each representative of the residents that live in that building. A family cookbook at Plaza Terrace included over 170 recipes that have been handed down through the generations. The residents and family members were very pleased to have their recipes published so that others could enjoy them.

Illinois nursing facilities are constantly coming up with new ways to promote families as partners in care. Here are some more ideas that have been utilized successfully across the state:

Family Resource Center

To provide a one-stop source of helpful information for families, some facilities have created a Family Resource Center, a specially-designated area of books, pamphlets, newsletters, and videos available to families on a variety of healthcare topics. These resources are included on a list distributed to families, with individuals checking out materials as they need them. Many of these materials can be obtained for free from such community organizations as the Alzheimer's Association, Parkinson's Disease Foundation, and American Diabetes Association.

Family Mentoring Program

Some facilities have developed a mentoring program whereby veteran family members are hooked up with newcomers for sharing information and emotional support. The opportunity to help someone else provides the more experienced family member with a sense of satisfaction and can be a welcome diversion from their own family situation. New families appreciate hearing from their peers rather than receiving information only from the staff. Not only do they learn of those insights that only experienced family members can communicate, but they feel better knowing that they are not alone with their issues and concerns.

Family Visitation Program

Visiting a loved one can be very difficult for some family members, who may find it difficult to make conversation past discussion of the weather and the day's most recent meal. Illinois facilities are helping families by making proactive efforts to assist them with making successful visits. Some useful programs have included seminars on visitation; list of things to do during visits, articles on visitation in the facility newsletter; "visiting kits" -- boxes of items on a related theme that can be checked out by visiting families; an activity resource area of games, magazines, and supplies; and photographs of creative visits featured on a facility bulletin board.

Spiritual Ceremonies for Families

As spirituality often plays a key role in a person's ability to cope with change, nursing facilities have found it helpful to sponsor inter-faith spiritual ceremonies related to the nursing home transition. These ceremonies can incorporate meaningful readings, poems, and hymns that address the emotional challenges that family members face in placing their loved ones in a nursing home.

The nursing home transition can be a very traumatic time for family members, many of whom have struggled for years to care for their relatives at home. Placing one's trust in staff members, essentially "strangers" to those new to a facility, can be a difficult hurdle for families as they struggle to provide the very best care for their loved one. By reaching out to families, including them in facility programs, and sharing with them quality information, a nursing facility is demonstrating its commitment to developing a caring "partnership" with families that truly benefits everyone involved.

"Families: Partners in Care" Research Study

The Illinois Foundation for Long Term Care is currently sponsoring a research study entitled "Families: Partners in Care," assessing the needs of families of persons with dementia in long term care facilities. Serving as principal researchers are Kevin M. Kavanaugh, MA, Public Affairs Director of the Illinois Council on Long Term Care and Cindy Belle M.Ed., ACC, of Maryhaven Healthcare Center. The study design consists of several family focus groups taking place at nursing homes across the Chicagoland area. The results of this research endeavor will be reported at the World Alzheimer's Congress, taking place in Washington DC during the month of July. Among the study outcomes to be presented at this international conference are family members' recommendations on resident care, staff interactions, and needed family services. Serving as academic consultant is Dr. Carol Farran of the Rush Alzheimer's Disease Center. The Illinois Council on Long Term Care will be examining the results of this research study in the development of future statewide programs, policies, and reimbursement methodologies involving residents with Alzheimer's disease and their family members.