A family affair.

Wendy L. Bonifazi, RN, is a contributing writer to Contemporary Long Term Care.

Dementia patients' relatives need help, too

The problem comes up again and again. A long term care resident with dementia loses a personal possession, and a family member explodes. "We're really hurt by problems in care," says Phyllis Murphy of Stuart, Florida, whose husband has Alzheimer's disease. "If they're missing shoes and dentures, are they also missing meals and activities?" You have such a feeling of helplessness and frustration."

Misplacing items is so closely linked to Alzheimer's disease that it's often considered a symptom. Family caregivers come to expect this behavior at home, yet their tempers often flare when things turn up missing in a long term care facility.

It's tough to face ongoing doubts, suspicions, and internal conflicts with grace. No wonder some staff see relatives as long term care's backseat drivers, and want nothing more than to steer clear of their nervous barrage. But forging good relationships is key to quality care.

Listening to family members is essential, says Farah Mirza, family ambassador at Silverado Senior Living, an assisted living facility specializing in Alzheimer's care in Azusa, California. "We couldn't do it without them," she

says. "The more information we get from them, the more empowered we are."

Relatives can become strong allies, providing valuable insights about their loved one's past and tips about what worked for them as caregivers. But good family relations aren't always easy. Just as the residents walk through the door with their special needs, the spouses, daughters, sons, and others coping with dementia arrive with theirs. "Family members can be just as much your patient as the patient," says Theresa Destito, manager of clinical social work for California's San Gabriel Valley Medical Center. "They need just as much support and help."

Most carry emotional baggage spilling over with conflicting feelings of relief, guilt, and worry, and grief--not to mention concerns about such matters as daily care, restraints, falls, and neglect. "This disease can be hard on the family," says Mirza. "Their loved one might look very healthy, but there is so much [cognitive decline]. For most family members, there's denial and there's grieving."

For many, the decision to place a relative in long term care only adds to the emotional strain, at least initially. And the usual worries about long term care are often magnified for families of people with dementia. A person who is confused and communicates poorly can neither recognize nor report poor care, they reason, and staff could take advantage.

"We have to help them develop trust and to be sure to help them along the transition," says Mirza. Destito agrees: "You have to give families permission not to be perfect, encourage them to take care of themselves, and understand when they say things they wish they hadn't said."

Right from the start

When family members recount their experiences, they often talk about the pain of admission. "The first day, she followed me to the door crying, 'Please don't leave me.' It almost killed me," says Erling Hennes, 76, of the day he admitted his wife, Lenora, 82, to a facility in West Palm Beach, Florida. "The next morning, she told me she was so afraid she'd never see me again. The staff never told me how to leave her."

Unfortunately, many family members get lost in the admission shuffle, adding to their emotional trials and hurting the chance they'll become allies, If staffers' ties with family members aren't nurtured from the start, they can degenerate fast.

One common cause of conflicts: contradictory ideas about the family's role, says Carol Levine, director of the Families and Health Care Project of the United Hospital Fund, a philanthropic research foundation in New York City. Family caregivers who have learned by trial and error how to dress, care for, and feed one individual are often frustrated when they try to share those techniques with time-strapped staff accustomed to routines. Many relatives who are used to the functioning as the primary caregiver are reluctant to relinquish that role, whether from a sense of worry, responsibility, or control. Some workers may welcome the assistance and oversight, but others may resent what they see as interference. Some families feel privileged to be "allowed" to provide care; others resent having to compensate for staff "incompetence."

To foster good relations, start getting to know prospective residents' families early, at the pre-admission stage. Doing so shows them they are valued, easing their loss of autonomy as caregivers and building a sense of trust. Encourage pre-admission visits and involve family members as the resident settles in on admission day.

It's vital not to overlook the departing family's emotional upheaval, notes geriatric nurse practitioner Sharon Maguire, RN, of Milwaukee's Luther Manor, a CCRC for 1,000 residents that has a 54-bed Alzheimer's special care center. "While other staff involve the new resident in an activity, our social worker walks out the door with family," she explains. "We usually give families an assignment that day, not to overwhelm them but to help them feel important and encourage them to return the next day." The family might be asked to bring more items for curio cabinets outside residents' rooms, for example, or to use a binder to create a life-story book--projects that later help caregivers see residents as individuals and give residents, families, and staff something to talk about.

Providers should also he sure their staff is willing to listen to a family member's perspective. "Staff often resent lay persons telling them what to do, even the simplest suggestions," says Levine. "Families know they're the expert on this patient, and when they're ignored, they feel the patient will be ignored."

"Some families ask what Morn did at 2:01 a.m., or they'll call 20 to 30 times a day to check up," adds former administrator Debbie Fossey, now community relations director at Regency Park-El Molino in Pasadena, California. "Staff need to know that's because the family members were used to doing it themselves."

Listen to what families have to say, invite them to serve on advisory committees, and encourage their continued presence as volunteers. You can learn a lot from tuning in to their complaints and suggestions.

A matter of support

As tough as the transition into long term care can be for some family members, the need for emotional support goes beyond moving day.

Those who've been caring for a loved one with Alzheimer's disease often have other emotional concerns that long term care staff can address. If residents have been ostracized in the community or another facility because of loss of memory or impulse control, aggression, or overt sexuality, for example, staff and other families can help family members realize they aren't alone. Facility-sponsored support groups can help residents' relatives fill social voids while educating them about dementia. "Families need to find new friends. That's what support groups do: introduce others with a common bond, who can validate perceptions," says Levine.

Families have different ways of grieving the loss of the person they knew. Pauline Boss, professor of family social science at the University of Minnesota, and author of Ambiguous Loss: Learning to Live with Unresolved Grief (Harvard University Press, 1999), describes family members' limbo when a loved one is physically present but mentally gone. Some disappear, unable to accept personality changes. A "difficult" relative who is reluctant to withdraw may be having trouble dealing with loss. Staff sometimes must recognize when a family member, usually a spouse, needs permission or redirection to resume other activities.

Education goes a long way in helping relatives deal with dementia. Luther Manor offers eight two-hour classes covering the disease process, behaviors, communications, losses, and stress management for caregivers and residents. The programs, held late afternoons and evenings, are offered jointly to family members and staff.

The classes, notes Maguire, help relatives understand the roles of staff and family, prompt open communication, and encourage frequent and meaningful family visits. "We also see less frustration and questioning because families understand staff approaches," she adds.

Advance counseling can also ease a family's distress. Though reducing the incidence of falls is the primary goal, it's also important to educate families about possible causes, such as medications and confusion. Doing so can decrease their distress and fears of neglect.

In all aspects of family relations, communication is key--and that means listening as well as talking, whether you are counseling a grieving spouse or sleuthing for helpful facts about the resident's past. "We really try to gather as much information from the families as we can, right from the beginning," says Mirza. "They know what's worked for them, and, in many ways, we let them lead the care."

Reaching out through respite

One way to help the families of people with dementia is to offer respite care. This is most commonly offered in the form of adult day services, which are widely available in some parts of the country but still scarce in others. These two new options show promise as well:

* Nighttime respite care. Agitation that begins with sundowning and continues until morning can quickly exhaust family caregivers. "It was simple logic--just do adult day care at night," says Ann Marie Levine, RN, clinical specialist in gerontology for ElderServe at Night, an innovative program begun by the Hebrew Home for the Aged in Riverdale, New York, in June, 1998. "It gives families a break, and a chance to think clearly about the future.

The program now operates 369 days a year from 7 p.m. to 7 a.m. Operating in the same location as one of Hebrew Rehabs adult day programs, it provides services including all therapies. showers, grooming, meals, art and music therapy. and other continuous activities.

One of the program's two activities rooms converts to a bedroom for agitated participants. The main rest area for clients is equipped with beds and video monitors.

The program, which can accommodate 15 residents per night, has yet to reach maximum capacity. "Any new concept takes time," says Levine. "What we didn't expect was the strong resistance to letting go and relinquishing care at night. Spouses have more guilt than children, because they fear their spouse will wonder what they're doing at night, or think they're giving up on them."

Doreen Spence, 37, a medical office manager from the Bronx, is grateful for the program. "If I don't get enough sleep, I don't have the strength to deal with my mother or my baby," she says. "I was zonked. When someone with Alzheimer's is home, you don't sleep many nights. At night, she's angrier and more active, wanting to go out visiting and shopping. She's prone to falls, so I have to be awake whenever she's up."

Spence is the sole caregiver for her 74-year-old, 160-pound mother, who buckles at the knees when walking. "They're pioneering a great thing," she says. "It gives me a chance to regroup and regain my patience, while providing a mental stimulus and making participants want to live again."

The $75 per night fee is paid privately by some clients and covered by Medicare for others. Some clients use the Hebrew Home's day respite services as well, and several have been admitted to the facility.

* Emergency respite care. What happens if you are critically injured in an motor vehicle accident, your spouse has Alzheimer's disease, and your nearest relative is thousands of miles away?

In 1996, Florida's Greater Palm Beach Area chapter of the Alzheimer's Association launched a respite program designed for immediate placement. The program, now run by the Alzheimer's Community Care Association, relies on a rotating list of local long term care providers who accept placements for up to 48 hours without charge.

"It's a lifesaver in times of need," says Steve Delach, community relations director for Cresthaven East Assisted Living, a 240-bed facility in West Palm Beach that participates in the program. "If a bed's available, we can have someone here within an hour. It's a little hectic for staff, but we extend ourselves. Most come in the middle of the night." To help calm emergency respite clients, a nursing assistant stays with the person for a few hours, typically in the person's room, activities area, or dining room.

The association handles the referrals and helps get physician orders by phone for initial management, sometimes including medications to counter crisis-triggered stress and confusion.

Providers aren't hampered by excessive paperwork. The assisted living facilities don't need an MDS and have 30 days to complete Florida's Form 1823, which covers diagnosis, treatment, need for assistance, and other assessments.

The service has been well received. "Families really appreciate it," says Delach. "It's a great community service." BY WENDY L. BONIFAZI