CHAPTER TEN
THROUGHOUT THIS BOOK, you’ve read again and again that the goal should be to preserve as much function as possible for as long as possible. Families are, and should be, central to this effort. But there are many different professionals who can help families achieve this goal. Just as it takes a village to raise a child, it also takes a village to care for an elder with dementia. In this chapter, you’ll find an outline of the types of specialists who can help your family and your loved one.
Occupational Therapists
Occupational therapists deal with the practicalities and the techniques for helping patients preserve and improve their quality of life. They form a bridge between medical concerns and social concerns. Julie Groves is an occupational therapist based in the San Jose area, with decades of experience in consulting with patients and families in their homes. She shared some things all families should know.
Occupational therapists ask questions that are different from those that doctors ask. “Instead of asking, ‘How do we fix this illness?’” she says, occupational therapists ask, “‘How can the elder get back to having a good life?’ ‘How does this person adapt?’ ‘How can this person accommodate the mental and physical changes they’re experiencing?’”
Occupational therapists work out personalized systems and adjustments that allow patients to continue eating, bathing, dressing, toileting, socializing, and all the other things that make up a fulfilled adult life. Sometimes this may get done in one or two visits. In other cases, the occupational therapist may check in more regularly: every few weeks or every few months. Medicare usually pays the cost of an occupational therapy consultation for identified events, such as falls risk, hospital stays, ordering a wheelchair. For wheelchairs, always ask for a reclining wheelchair and a gel cushion to decrease the risk of pressure ulcers from sitting in one spot all day.
It’s often impossible to teach new things to a confused person, so occupational therapists try to figure out how patients can get what they need with the skills they retain. The most successful solutions do not remind or correct, but give help without the elders realizing that they’re being helped. In addition to cutting down on arguments, this attention to subtlety will also bolster the elders’ self-esteem. It can be difficult to remember all these different techniques in the moment. Ask the occupational therapist to write down the protocols. That way, caregivers at home or in a facility can institute changes to make daily care better.
In dementia care, occupational therapy almost always centers on working with family members and other caregivers. How should the furniture be arranged to allow for maximum freedom of movement? If bath time is a battle, might it be because the person with dementia is afraid? If Dad isn’t eating, would he get better nutrition if snacks were set out on the counter to remind him to eat?
Dementia often affects parts of the brain that initiate tasks, areas that help us plan and carry through. This is called executive function. Your mom may no longer have the brainpower that prods her to start a meal or even to ask for one. In addition, she may have lost the ability to sense hunger. Don’t wait for her to say she wants dinner or ask, “Do you want dinner?” Just announce, “Here’s dinner!”
Dementia may also damage the midbrain, which is thought to coordinate all the sensory input that we receive. Keeping the daily routine the same can make it easier for those with dementia to “go with the flow” and enjoy the day. Conflict over routines may have roots in some sensory problem, rather than in stubbornness.
Occupational therapists also help devise systems to ward off problems that inevitably develop as dementia progresses. Assume that your loved one is going to fall. Assume that your loved one is going to make a bad decision. Assume that your loved one is going to have fear about day-today tasks. Anticipate caregiver burnout. It’s easier to cope with these difficult issues if you have systems in place at the beginning.
Physical Therapists
While it’s important for those with dementia to keep moving, periodic hospital stays or other chronic conditions often strand them in bed. For every day elders spend in bed, they lose 5 percent of their muscle mass (That’s 50 percent in ten days!). If the person with dementia is hospitalized, ask for a physical therapy evaluation as soon as your loved one is admitted. More than once I have been called to the cardiac unit for an elder who came in for heart failure or arrhythmia, stayed in for five days, and now cannot walk (yes, that fast). Even after just a couple of days, it may require a physical therapist to help an elder get going again. You can also call a physical therapist when a loved one does not seem as steady on his or her feet as before.
Physical abilities need to be constantly reinforced. You need to use your body, or your body will become less and less fit. Sitting in front of the TV all day is the worst. Much better is engaging in meaningful activities and being active. Tai chi, walking, dancing, and doubles tennis are all great ways to be social and active.
Even if exercise is not possible, it’s important to keep working on motor skills. Have the patient roll over in bed. That uses a lot of muscles. Keep your elder as active as possible with fun activities, and the physical therapist can do an assessment and write out protocols to keep the patient safe.
The therapist will work to help the elder walk as independently as possible. The therapist will help determine if a walker is needed to stabilize walking, and if so, which one (so don’t buy one on your own). A walker is much more stable than a cane.
People with dementia often have trouble getting motivated to do physical therapy. They may get confused and/or agitated. They often do not remember the therapist from appointment to appointment. Because these situations can be so difficult, some physical therapists avoid treating folks with dementia. I have heard more than a dozen times when referring an elder to a therapist for a history of falls: “Patient has dementia, not appropriate for rehabilitation, patient discharged.” Your geriatrician or the local Alliance on Aging should know of therapists who can handle those with failing brain function. The point is not that the person with dementia has to “learn” the skills, but that the physical therapist works with the elder and guides the caregivers on how to safely assist in walking or transfers.
When embarking on a physical therapy program, morning appointments in a quiet environment usually work best. People with dementia are more likely to get frustrated and cranky if they are surrounded by noise or if they are tired in the late afternoon or early evening. Enlist the help of family members and caregivers. A familiar face present for the appointment will give the elder the security to get with the program more quickly and, thus, to get much more out of treatment.
Look for a therapist who knows how to break down complex movements into a series of small, achievable steps. Just as recommended in occupational therapy, have the physical therapist write down step-by-step instructions for helping your elder. People with dementia won’t be able to keep long instructions straight. Also, use goals as a tool. For instance, if you want the person to walk a couple steps, say their snack is in the next room. The patient may be more willing to make the effort if there’s a payoff.
Care Managers
When caring for a relative with dementia, you may feel like you need to “do it all,” but that may not be possible. Caregivers can’t always be superheroes. They have jobs, children, and other commitments. That’s where geriatric care managers come in. These professionals—often trained as nurses, gerontologists, or social workers—have expertise in dealing with the practical issues of aging.
Care managers can provide a one-time consultation, or they can be helpers who deal with all the details of medical care, social engagement, and home management. They can:
• Assess and make the home environment safer.
• Assess the overall health and well-being of the client.
• Develop a personalized care plan with the input of the client and the family.
• Identify and set up resources that need to be in place, such as home health aides, adult day care, and durable medical equipment.
• Help coordinate and manage various treatments and act as a liaison with doctors and other medical professionals.
• Coordinate discharge planning after a hospitalization.
• Arrange transportation to and from social and religious gatherings.
• Manage household services—cleaning, maintenance, shopping—as needed.
Care managers do not make decisions for families, but they identify alternatives and possible solutions. They do as much or as little as a family desires.
Most family members feel relieved when a care manager becomes part of the mix. The addition of such a helper may make it easier to discuss difficult issues or alternatives. For instance, an elder may be more open to the suggestion of hiring a financial manager if it comes from a “professional” rather than from a family member. If asked, care managers can give advice on elder care issues most families find challenging, such as advance health directive choices or deciding when a dementia community is appropriate.
Studies show that elders who have care managers are less likely to be hospitalized or to visit the emergency room. By making home systems more efficient and by cutting the need for family travel, care managers can also save money in the long run. But care managers may not be right for every family or for every budget.
Care manager fees vary widely, from $100 to $150 an hour in San Francisco to more than $200 an hour in New York City. In some cases, long-term care insurance or the Department of Veterans Affairs will pay the fees. Generally, however, the care manager bill must be paid out of pocket. Some communities have social workers who can help through the local Aging and Adult Services office.
Consider whether your needs are more medical or social. If they’re more medical, you might want to choose a care manager with a nursing background. How many years’ experience does the person have? What would be that person’s initial ideas for meeting your family’s needs? Can he or she provide references? The Alzheimer’s Association in your area will provide local resources.
Caring for the Caregiver
In most families, I have observed that the role of primary caregiver seems to fall to one person. This seems to have more to do with personality and family dynamics than it does with proximity or convenience. You may live close by or may not work outside the home or may be particularly close to the person with dementia. Or you may work, have children, and live a plane flight away. Whatever the particulars, you need to remember to take care of yourself. Managing the care of a partner or relative with dementia may be one of life’s most difficult challenges. It can’t be done—not for long, anyway—under conditions of exhaustion, isolation, personal anxiety, and professional chaos. Here are some tips.
• Work at letting go of the guilt. While life with dementia can hold good times, dementia also causes many problems. Accept that some of these problems will never be solved. Don’t beat yourself up because you can’t make everything perfect. Dementia isn’t perfect.
• Join a support group. You can’t help your loved one unless you have a safe place to air your own fears, anxieties, and frustrations. Many day centers and nursing homes sponsor them. The Family Caregiver Alliance (www.caregiver.org) offers pioneering resources for those caring for people with disabling health conditions. Disease-specific groups like the Alzheimer’s Association (www.alz.org) or the American Parkinson Disease Association (www.apdaparkinson.org) will make referrals. Local chapters of the Alliance on Aging will also make recommendations. These groups provide emotional support, referrals, practical advice, and information about other resources.
• Don’t be afraid to ask for help. Caregivers often get so burned out that their own physical and emotional health suffers. When people inquire about how they can help, ask if they can come over for a couple hours so that you can do an errand or just have a little time to yourself. Hire a caregiver to allow several afternoons a week away from caregiving. Studies show that the primary caregiver is much more at risk for illness and death from the stress of caregiving.
• I have seen families where an unspoken decision has been made that only one person will be responsible for all the care of the person with dementia or where there is a blended family with a second spouse and the children from the first marriage. That is a recipe for trouble. A family meeting should be held to clearly spell out the responsibilities and the compensation in some way for the person devoting his or her life to the care of the elder, as well as the finances for care and who will be in charge. I strongly also advise that a yearly review be required for the person in charge of the finances.
• Get educated. There are many, many books out there to help families cope with the issues that surround aging and dementia. See the “Resources and Other Information” appendix at the end of the book for a list of those I think are most helpful.
Sucked Dry
For decades, friends commented on what a devoted couple Monty and Doris made. They met during World War II. He was a handsome GI; she was the sparkling life of the party. After the war, they married, bought a house, had two children, and enjoyed a prosperous middle-class life of socializing, golfing, and travel. But then Doris’s mental capacities began to falter.
Doris grew paranoid. A piece of racy junk mail, a Victoria’s Secret catalog, was enough to set her off. She accused her husband of cheating. Then she started to get suspicious of her son and daughter. She was convinced that someone was stealing from her. Though she normally had a sunny, loving personality, she began to pick arguments. She didn’t want her husband to read the paper. She insisted that he stop subscribing to periodicals. She didn’t want him to leave her long enough to do the basic housework. She refused to go to the doctor, and she didn’t want her husband to go, either. If he even tried to close his eyes, she’d yell, “Don’t you go to sleep on me!”
This went on for months, then years. Though he was miserable, Monty believed that it was his duty to take care of Doris. Not understanding that Doris’s demands and paranoia were caused by dementia, he thought Doris’s personality change was somehow his fault. He felt guilty that he couldn’t meet all of Doris’s needs. He put off his children’s offers of help and barely managed to keep the household afloat. Monty persevered, but he was emotionally and physically spent.
Finally, as so often happens with primary caregivers, Monty got sick. His congestive heart failure made an operation and hospital stay necessary. Only then did Monty admit he needed help with his darling Doris.
Sadly, it’s all too common for caregivers to drive themselves to collapse before admitting that they can’t do it all. Recognize from the outset that caring for a dementia patient is a job that can last a long time. It can sap the strength of the strongest person. Take care of yourself so that you can take care of your loved one.