CHAPTER ELEVEN
FIGURING OUT HOW TO MANAGE the care of someone with dementia may be one of the biggest challenges a family can face. Deciding on the best care option is a very personal decision. To choose the right solution for your family, you need to consider two major factors: finances and the support system that will help the patient get the most out of life.
If your loved one needs twenty-four-hour care, cost will be a major factor. An assisted-living facility will run $4,000 to $8,000 a month; skilled nursing care (or a nursing home) often runs $10,000 a month. Around-the-clock professional home care costs $10,000 to $20,000 a month. These numbers may be lower in a rural state like Kansas or North Dakota and higher in urban areas like New York City. No matter what your geography, though, care doesn’t come cheap. While long-term care insurance will cover some of this cost, most policies will not cover all of it. Medicare and health insurance do not cover these services.
Keeping elders in their home can be rewarding. The surroundings are familiar, and they’re likely to be close to those who know them. Some folks are just capable enough that they can care for the basics if family members bring them groceries and take them to appointments, and these people are not ready for caregivers in any form. Others, with a well-trained home care staff, may continue to enjoy outings, shopping at the mall, eating at restaurants, gardening, and socializing with friends. Knowledgeable caregivers are able to gauge the elders’ current state: Tired? Hungry? Bored? And with a friendly, reassuring manner, they can address the elders’ needs and engage them in activities they enjoy.
So what do you do when your mother is missing meals, not bathing, missing appointments, not changing clothes, and getting more confused at night, but she refuses all offers of help and caregivers? This is a common challenge. Often, from the brain damage, people with dementia cannot see that they are not caring for themselves. They become offended at any suggestion they are not “clean” or are incapable of daily care.
Launching a frontal attack—hiring a caregiver and sending that person in for eight hours or more each day—usually backfires. The elder rebels, and the “interloper” is sent packing. I have found that the caregiver needs to be introduced slowly, perhaps as a “friend” of the family. It’s a good idea to at first have a family member there in order to decrease fear of a new person. Perhaps start at two hours, three times a week for a few weeks, then a few hours daily. Often, the time can be expanded from there. Any medical event with a hospital stay is an opportunity to introduce caregivers. You can market the addition of caregivers as a way to get out of the hospital. In that sort of situation, the caregiver is accepted more readily.
People often promise loved ones that they will never be placed in a facility. “Don’t worry, Mom. I’ll never put you in one of those places.” These exchanges are understandable. First off, as the saying goes, there’s no place like home. And in the past, the care of those with dementia too often has been institutional and impersonal. At its worst, elder care has been bleak and unsafe. Yet there are increasingly more residential options these days, and programs are steadily improving and evolving to meet modern needs.
Don’t discount the possibility that—despite promises that may have been made—remaining at home may not be the best option for your loved one. Family members may be too close to the patient to be objective about his or her needs. They also may not have the necessary training to care for difficult behavior related to dementia. Thus, some needs may not be met.
Emotional conflict also gets in the way of providing the best care to the patient. For instance, it is very common for people with dementia to consider the family caregiver a “jailer.” The “jailer” tells them what to do and won’t let them do everything they want to do. People with dementia may feel lonely and bored, which only leads to more conflict.
In a good dementia care community or vibrant day program, visits, outings, and activities will be part of every day. Quality of life may improve. Family members will be relieved of the physically and emotionally draining aspects of sole responsibility of care. A family can go back to being a family, and professionals can take over the nitty-gritty of the engagement, personal care, and logistics. Families who cannot afford to hire the caregivers at home or cannot care for the elder at home for other reasons should not feel guilty.
It’s still very common for people with dementia who live in care communities to say, “I want to go home.” That also is a common refrain of elders with dementia who live in their home of forty years. Don’t let this send you into a spiral of guilt. When a loved one says things like this, he or she often really means, “I want to go back to when everything made sense.” Obviously, that’s not possible.
Though it may be extremely difficult, again consider the goals of care: What does your loved one need to be successful? What does “success” mean now? Where can he or she best get those activities and support? Consider also that as dementia progresses, transitions from one living situation to another become increasingly disruptive and difficult. The needs of an elder may change as they age; the sociable assisted living community may be too much when the elder is impulsive and falling often, but not engaging with groups.
Start by getting referrals from the U.S. Administration on Aging’s Eldercare Locator (www.eldercare.acl.gov), where you can search by zip code, city, or county. Local offices of the Area Agency on Aging also link to community-based resources.
The following sections offer an overview of the basic alternatives for dementia care.
Day Programs
Staying at home all day can be exhausting and frustrating for both the elder and the caregiver. Day programs offer a middle ground between living at home and being in an assisted-living facility or nursing home. There are many different types of day programs. Some are publicly funded; some are private pay. Some offer a program day that lasts four hours; others go for as long as twelve hours. Some emphasize medical care; others the social and educational. But they all provide a facility where elders come together, socialize, and participate in activities, while some also offer physical, occupational, speech, and other therapies on-site.
Day programs help people with dementia continue to do what they enjoy. If they like building models, they should keep building (perhaps more simple) models. If they like gardening, get them busy with the planting and weeding, though it’s key to have raised beds to minimize bending and the risk of falls. They should have social outlets. A diagnosis of dementia doesn’t mean people should collapse into a recliner or a wheelchair for the duration. They should keep moving. If tennis isn’t realistic any longer, maybe balloon volleyball is. Short-term memory loss doesn’t get in the way of dancing. Tai chi is great for community participation and has been shown to decrease falls.
Most families don’t seek out a day program until there’s a crisis. Perhaps the person with dementia wanders off and is picked up by police. Or perhaps an accident makes it clear that driving is no longer an option. The earlier an elder enrolls in a day program, the better. If the program becomes familiar before dementia becomes advanced, the elder will adjust more easily. The routine of going to a day program adds structure and interest to the passing days. Interaction with others improves mood. Increased activity also contributes to better sleep patterns. For people with milder dementia who still need outside engagement, suggesting that they “volunteer” to help the seniors and work alongside the staff members may be a more acceptable framing of this activity. Speak to the administrator, who is likely experienced and creative in helping loved ones adjust to a new environment.
Most people with dementia initially resist the idea of a day program. “Why?” they ask. “I’m just fine staying at home.” It depends. If there is support at home to keep the elder engaged in activities, outings as well as with family, a day program may not be needed. However, too many elders spend their days parked in front of TVs, just watching whatever is on the channel. Sitting for more than two hours at a time increases the risk of pressure ulcers, blood clots, muscle contracture, and weakness of the legs. That increases the risk of falls. The elders may doze during the day and then not sleep at night. Or they may just demand snacks and gain weight, making it even harder to walk. Day programs can give them an activity separate from the family. And as we all know, it is good to be away from the family for at least part of the day.
Suggest that the elder just give a day program a trial period, say two months. I advise a family member to go with their loved one the first week to break the ice. It usually takes less time than that before people begin to look forward to the interaction and the activities.
When you’re looking at senior centers and trying to decide which is right for your family, remember to look at it through the eyes of the elder. Your spouse may have been a college professor, and an exercise class that involves throwing beach balls around may seem like something that he or she never would have been interested in, but that activity may be just right for where your spouse is now. Give the program a chance.
Check to see if people are really engaged in activities, rather than just sitting around or wandering the halls. Do the staff members seem cheerful and encouraging? How many staff people are there compared with the number of clients? Laws generally mandate a ratio of eight clients to each staff member, but programs usually keep much lower ratios than that. Many programs run at six to one; Alzheimer’s programs at four to one. When calculating these ratios, be sure that the facility doesn’t count administrators, a common dodge to make it seem that there’s more supervision than there really is.
Day programs vary widely in cost, but you can expect to pay anything from $50 to $100 a day depending on location and program. Adult day health programs receive some public funding through Medicaid and offer subsidized rates, and PACE programs (Program of All-Inclusive Care for the Elderly, a Medicare/Medicaid program) may be covered by insurance. Laws require that they have medical staff members on-site, so these programs generally offer shorter days to contain costs. Some private facilities may offer a sliding fee scale based on a family’s ability to pay.
Home Care
Some patients may prefer to stay at home or they may need help at night or they may need twenty-four-hour care. In these cases, consider a caregiving agency. Research each company thoroughly. Remember, these firms will be sending people into your home. Check them out the way you would if you were hiring someone to watch your newborn child.
What is the agency’s reputation? Will they provide references? Are they insured and bonded? What kind of training do they provide to their caregivers? What kind of background check do they do on their caregivers? (At a minimum, they should do a criminal background check and a tuberculosis test.) How are caregivers supervised? Can you meet the caregivers before they’re assigned?
Insist on a caregiver who has experience working with people with dementia. Such caregivers will know techniques that other caregivers may not, and they will tend to be more understanding of the patterns and behaviors of these elders. Also insist that the caregivers speak the same language as the patient. If your loved one can’t communicate with a Spanish-speaking caregiver, he or she may become isolated and withdrawn, which doesn’t add to quality of life.
You may also choose to hire a caregiver privately, which is usually less expensive. Remember, though, that in this case, the caregiver is probably not insured and that you are responsible for all the background checks and other tests. If the caregiver is sick or can’t come to work, you must have alternatives. Ask all the same questions you would if you were vetting an agency.
Assisted-Living Facilities
An assisted-living facility is an intermediate step between complete independence and a skilled nursing or dementia community. In independent senior housing, elders must be able to take care of their own medication and medical appointments without guidance or supervision. In assisted-living facilities, often the elders can care for their daily activities, such as eating and walking independently, but the staff members provide the medications, meals, personal assistance, and housekeeping.
Many variations on the theme exist. In the facilities for the most independent, residents have their own apartments. Other facilities have private apartments but communal dining. Still others offer transportation as needed.
Some programs provide more structure and support to allow elders with milder memory decline to remain in the assisted-living area. That may be great for a patient’s self-esteem, engagement, and sense of normalcy.
However, if the person with dementia has a tendency to wander or to have significant behavioral issues, other elders will ostracize that person for the odd behavior. In these cases, the elder needs a secured residence for personal safety.
Remember that you aren’t picking out a hotel. A facility that has beautiful views, flawless landscaping, and tastefully appointed rooms may not have staff members trained in dementia care. It may not have equally top-notch programs that engage your loved one and help him or her to preserve as much function as possible for as long as possible. It may not have equally excellent food, with attractive fruits, fresh vegetables, and an emphasis on hydration. (Dehydration is very common among people with dementia because they forget to drink. This can cause a whole array of health problems.)
Ask all the same questions about dementia care training, staff-to-patient ratios, insurance, bonding, and background checks that you would for other types of elder care.
Look for a facility that offers stimulation at the highest level possible for every patient. Look for small group activities and individualized attention. Remember that we have a “use-it-or-lose-it” brain. People with dementia need to do things and stay as active as they can. For instance, your father may have been a terrific bridge player but may no longer be able to remember the complex rules of counting cards and bidding. Perhaps he can play a simpler game, like dominos, and be successful at that level. Your aunt may have once been an expert at needlepoint but no longer have the motor skills or the vision to do it. Maybe she can paint on fabric instead.
Board-and-Care Facilities
Some patients and families opt for board-and-care facilities, usually private homes where two to three caregivers take care of five to six patients. The quality of care varies greatly in such facilities. I have found the best ones are often run by nurses. Be sure to ask lots of questions, do background checks, and get references. A board-and-care facility will not usually have as many activities as a larger one. In some cases, a patient may attend a day program and come home to the board-and-care setting in the evenings.
This type of care can be a good solution if patients have more medical needs than can be addressed in an assisted-living setting, such as they don’t drink fluid so they need frequent prompting or they have frequent falls and need to be watched more carefully. It’s also appropriate for elders whose dementia has progressed to the point where they can only cope with one person at a time. A smaller, more personalized setting may be less stressful for these folks than a large dementia unit.
Assisted-Living Dementia Communities
If elders begin to wander, if they become aggressive or forget to eat, they may need the more supportive environment of a dementia community. Ideally, these units provide more staff members to look after residents, a physical environment that is easy to navigate, and activities appropriate for those with dementia. Since about 60 percent of residents in nursing homes or assisted-living facilities have some kind of dementia, this kind of facility is the fastest growing segment of the business, according to the Alzheimer’s Association.
Unfortunately, there isn’t very much oversight of these programs. In more than a third of cases, according to the Alzheimer’s Association, families weren’t informed before admission that dementia communities are more expensive than regular assisted-living accommodation. Facilities aren’t always clear about exactly how the dementia wings are different from other residential areas.
When run well, these units can make life much better for elders. But be sure to ask questions: How much will it cost? What sort of programs does the facility provide for residents? Do staff members receive training that is specific to dementia care? How does the facility handle the problems common to people with dementia? Is the community set up in a way that is safe yet pleasant for dementia patients?
Remember that appearances are not as important as programs and a well-trained staff. Don’t choose a place just because it looks like a Hilton and has fancy décor. It’s much more crucial to choose a community where elders are alert and engaged in activities and where the staff members are easily found, helpful, and friendly.
Activities and personal interactions are crucial to good care. Spend some time at the facility. Drop in unannounced. Are residents engaged in interesting activities, or are they dozing in their chairs? Are residents walking around? Beware of any place where everyone is in a wheelchair. That suggests the staff members don’t work at keeping their residents walking, which leads to pressure ulcers, blood clots, or the frozen muscles known as contractures. Lately, I am seeing more facilities that are short-staffed. Some elders with dementia wander or even try to run away; they need supervision. Other elders require help with situations such as toileting and left on their own might fall and injure themselves.
Check out the “Dementia Care Practice Recommendations” on the Alzheimer’s Association website (www.alz.org/professionals/professional-providers/dementia_care_practice_recommendations). Be wary of any dementia care unit that doesn’t meet these basic standards.
Skilled Nursing Facility
Often, families come to me thinking that a nursing home is the only alternative. Nothing could be further from the truth. Few people with dementia need to be in a nursing home. That is the right choice if an elder has been in the hospital and is too weak to go home and if that is the only place to get frequent physical therapy. If the patient needs rehabilitation and can tolerate being in a facility and can follow all the rules, this level of care makes sense. However, if elders are distressed, fighting care, and scared of the intervention, they may do better at their residence with familiar surroundings and caregivers, with a home health physical or occupational therapist and a visiting nurse.
Nursing homes offer much more skilled medical care than other facilities. In these places, there are nurses to help with diabetes care, complex wound care, and other complicated medical issues such as emphysema. The downside is that nursing homes are less homelike and more institutional. They usually offer fewer activities. They do not necessarily provide more attentive care.
Ask all the same vetting questions you would of other facilities: How many patients per staff member? What sorts of enrichment programs are available? How are problems handled? How does the facility communicate with the attending physician and with the family? What are the costs? There is a movement, the Eden Alternative, to help make these facilities less factory-like in part by adding plants, pets, and other homelike touches. If you can, try to find a facility with these amenities. However, again, it comes down to staff concern and commitment, not advertised perks.
Hospice Programs
Hospice programs offer caregiving and medical care in which the goal has shifted. Rather than seeking to prolong life and treat every disease aggressively, the goal of hospice care is to provide comfort for whatever time is left to the patient. Patients are eligible for hospice care when their life expectancy is six months or fewer.
Hospice services can provide incredible comfort and peace at the end of life. Hospice agencies feature an interdisciplinary team of professionals with expertise in end-of-life care. These teams attend to the whole person, not just his or her diseases, offering psychological and spiritual services as well as creature comforts like massage in some programs. Studies have shown that patients who receive hospice care at the end of life have better pain control and are less likely to be hospitalized. Their families report greater satisfaction with end-of-life care. Emotions remain long after many other aspects of someone’s personality have slipped away. Hospice programs provide a warm, calming environment that helps both patients and their families.
Hospice care remains underutilized. Too many people end their lives in intensive care units, even though there is no hope of curing what ails them. The average stay in hospice care is only three to four days before death. All of these trends hold true for people with dementia even though Medicare has covered hospice care for dementia since 1982.
Part of the problem is that it’s so difficult to know exactly how long a person with dementia is going to live. These elders often decline by degrees, in a process that may go on for years. It’s important to remember, though, that dementia is a terminal disease. Even when treated, pneumonia for an elder with moderately advanced dementia has a 25 percent chance of resulting in death. Often, this is because the elder lacks awareness of early symptoms and delays treatment. Those with advanced dementia (loss of ability to move, engage, or eat) are at the end of life.
Families may fear that hospice care is about death. Actually, as a hospice medical director, I found that good hospice staff members focus on life, on making each day as good as it can be, and on helping elders and their families to live in the moment. The approach varies. Beware the hospice that just gives dementia patients a dose of morphine, Ativan, or haloperidol (Haldol) as an easy treatment for agitation.
If it seems like your elder is nearing the end, at least discuss the option of hospice care with your medical team. Of course, each family should make the decision that works for them and that is consistent with the elders’ wishes or with what you think your loved one would have wanted. Imagine your loved one’s younger self looking down on you now. If you’re giving the care you think he or she would want, instead of what you want, you’ll have less guilt of “doing the wrong thing.”
Nobody wants to talk about the end of life. If at all possible, though, try to have that tough conversation. Does your elder want to do everything to prolong life, or is he or she concerned with the quality of life?
If your loved one can make his or her wishes known, those wishes on the basic issues of life and death should be honored. The woman who can’t remember things from day to day wouldn’t be in a good position to understand the ramifications of intubation, but she could say if she wanted oral antibiotics for treatable medical issues. The choice of forgoing a treatment that might prevent death is a basic right we shouldn’t take from someone who can choose.
One sticky issue is determining if the elder has the capacity to make such medical decisions. Kay was living alone, marginally, but protected her independence. She developed a severe leg infection and delayed care. When taken to the hospital by neighbors, she was told she needed to have an amputation: the leg was too damaged to save. She refused the surgery. An outside local aging counselor was called in and explained to Kay that she would die within weeks if she did not have the surgery. By this time, the hospital had decided she did not have the capacity and could not now choose to have the surgery.
This actually worked out well for her. It would have been miserable to cut off her leg against her wishes. How would she take to having to be in the hospital? Having pain that was not well treated? (Elders with dementia almost never get adequate pain relief…if any at all. They are more likely to get agitation from pain treated with Ativan.) She would have needed to stay in bed, have daily dressing changes that are also likely to be painful. And then there are the complications….
Instead of an unwanted major medical intervention, Kay was placed on hospice, given wound care and morphine for her pain. She died peacefully a few months later.
What is the ethical way to address challenging care questions? First, the hospital should have an ethics board to decide what should be done, after a person’s capacity to choose has been evaluated by a neuropsychologist. As covered in chapters 3 and 5, the Mini-Mental State Examination screening test is not adequate to definitively diagnose dementia or mental capacity.
It’s most important to remember that elders should be allowed to make their own choices for as long as they have capacity. If a person changes his or her mind to have life-saving treatment—as long as it has already been advised by the physicians—that person has the right to choose the treatment to live.
We must also remain alert to the overuse of hospice care—of referring elders with dementia to a hospice facility because they’ve been to the hospital too often. Beware the doctor who thinks that a man with moderate dementia and pneumonia should have the antibiotics stopped and be treated only with morphine at a hospice site, even when the man is getting better and wants to go back to his community for bingo.