Joy A. Glenner

by When Your Loved One Has Dementia

  The Alzheimer’s Disease Education and Referral (ADEAR) Center is a service of the National Institute of Aging (NIH) and is an invaluable source of nationwide information. The Alzheimer’s Association provides dementia-specific referrals, support groups, volunteer respite, caregiving training, and support. Check with your local office. (See Resources, page 129.)

  Be very wary of caregiving Web sites and advertisements you know nothing about. There are many moneymaking scams touting far-fetched treatment, cures, and services. Speak to an aging or dementia specialist you trust to verify an organization’s legitimacy.

  Locate and Join a Good Support Group

  Support groups are wonderful. Information from professionals is useful, but sharing concerns with others who face the same problems is often even more valuable. Not only are groups a great place to share ideas, but they also provide an opportunity to make new friends and get away from actual caregiving for a while. Remember Internet support groups also.

  Support for your partner may be available. More and more attention is being paid to the specific, personal concerns of those with dementia. There may be a support group for those with dementia in your area, and there is now a newsletter for those diagnosed with dementia: Perspectives: A Newsletter for Individuals with Alzheimer’s Disease.

  Health Care Planning

  Making Health Care Decisions for Your Partner

  You will eventually need to take over health care decision making for your partner. You, or someone you trust, will need to have a Durable Power of Attorney for Health Care (to be the agent) or obtain conservatorship for your partner. You need to have appropriate long-term health care plans in place for yourself as well.

  If you have already filled out a Durable Power of Attorney form, examine it. If your partner with AD is listed as your agent, be sure to change it. A person with dementia is, of course, not a suitable agent.

  The first thing on your health planning list should be Advance Health Care Directives for both you and your partner. A directive designates an agent and states long-term care and end-of-life wishes. You do not need an attorney to execute this document, but, if you have questions or there are problems, be sure to consult an attorney.

  Depending on your partner’s level of impairment, he or she may still be able to execute a form. If your partner does not have a directive and cannot or will not execute one, you or someone you trust will need to be appointed conservator. If the person is incapacitated but already has a directive with you or someone you trust as Durable Power of Attorney for Health Care, you or the other party should be able to take over health care management when needed.

  You and your partner should both list alternate agents on your forms. Choose your agent carefully. He or she must be older than age eighteen and have no conflict of interest (be a long-term care provider you use, for example). Your designated agent should be familiar with both your directive and your partner’s. It is best if the agent lives nearby and knows where both forms are kept. This will ensure smooth transition of your partner’s care if something happens to you.

  Obtain a directive form from a notary, a health care agency, or the American Medical Association. They are also available online. You need a notary or two other people (not the agent) to witness the signing of the form.

  Remember, the Advance Health Care Directive relates to care only. There is a separate Durable Power of Attorney for Finances. If you move from one state to another, you will need to execute a new directive in the new state. If you live part of the time in another state, you will need a Durable Power of Attorney in that state also.

  Establishing a Conservatorship of Person

  Conservatorship of person is done in a court, with an attorney present, so it can be very expensive. You will need to use it if your partner is too impaired to care for him- or herself but will not or cannot give you Durable Power of Attorney for Health Care. It is not the same as conservatorship of the estate.

  A Lanterman-Petris-Short Act (LPS) conservatorship is one that is initiated by the court itself, under special circumstances and for very impaired individuals.

  Choose Your Physician Carefully

  Examine medical care for you and your partner. You need physicians who understand and support you and take the time to address your health care concerns. You may have known your primary care physicians for awhile, but, if they cannot provide the support you and/or your partner need now, don’t be afraid to change. The important thing is that they be willing to spend the time you need by phone or by appointment. The advice they give must be sensitive to your individual needs and concerns. If it is not, try a recommendation from a health care professional or fellow caregiver you trust. Or call your health care group office or the local office of the American Medical Association for a referral. Look for a certified geriatrician (a physician specializing in the care of older adults) for primary care or a well-known neurologist or clinic for diagnostic services.

  Be sure to read box 2-1, “Dealing Effectively with Physicians, Attorneys, and Other Professional Advisors.”

  Long-Term Care Options

  Even if you feel you will never use long-term care, investigate the options now. You do not want to make a spur-of-the-moment, emergency decision. It is very important to check out the options, availability, and cost. Your financial planning must take into account the possibility of long-term care, including moving your partner to a full-time care facility. Unfortunately, most of them are expensive, so you will need to plan finances carefully.

  It is a big step to admit that you need help with caregiving. Home care may be a good first choice, especially if you need only part-time assistance, because you maintain control of care to a greater extent and your partner will still be in your own home.

  Long-term care agencies and communities specifically designed for those with dementia (such as adult day care, assisted living, residential care, and skilled nursing care settings) are a good choice for more extensive care because they are designed specifically to meet the needs of people with dementia. The type of long-term care which is best, however, is a decision for you and long-term care professionals to make together. All long-term care residential facilities have specific admission criteria that you will need to address. A mixed setting (in which residents with dementia and frail elderly residents share a facility) may be appropriate for some patients.

  There are a number of long-term care options.

  Family or volunteer respite. You are truly lucky if you have helpful family members. Some religious groups provide volunteer respite care providers.

  Free government-funded in-home supportive services. These services may be available if your partner’s income is low. They include assistance with basic daily living skills for only a few hours a week. If this care is available in your area, it is paid for and must be approved by the appropriate governmental body. The paid caregiver may be a family member.

  Private home care. This includes a wide range of options, from occasional companion care to expensive full-time nursing. Medicare will pay for medically necessary short-term care by approved home health care agencies but not for long-term respite for a chronic condition such as dementia. Health insurance and long-term care insurance will pay for some in-home care. Be sure to investigate policies thoroughly. Long-term care management agencies are a relatively new care option. They supervise the overall care of a person for families who cannot do so themselves (for example, if the family lives out of the area). Make sure that your home liability coverage is adequate if you use in-home caregivers.

  Home hospice care. This support service is paid for by Medicare for those who are terminally ill, and it provides valuable support for family members. Hospice care is also available in assisted living, residential, and skilled nursing facilities; hospice nurses and certified home health aides go there to provide end-of-life care.

  Day care. Day care can be for mixed populations or specifically for those with dementia, frail elderly persons, or those with
other specific diagnoses. It can be either social day care, some of which is dementia specific (usually regulated by the state’s Department of Aging or state Community Care Licensing department), or adult day health care (usually regulated by the state’s Department of Health Services). Adult day health care, along with other medical expenses, can be usually paid for by Medicaid, but social day care usually cannot. Long-term care insurance and the Veterans Administration may also pay for day care services.

  Assisted living and residential care. Assisted living facilities are for larger communities that provide nonmedical help, such as assistance with dressing, bathing, and meals. An assisted living unit is a specific section of a retirement community. Assisted living can be Alzheimer specific, for frail older adults only, or for mixed populations. “Residential care” and “board and care” refer to smaller, homelike facilities. They have the same licensing requirements but usually have ten beds or fewer, and often an owner or manager lives on site. Both assisted living and residential care are regulated by special community care licensing agencies in most states and may or may not be paid for through Medicaid. If it specializes in dementia care or has even one resident with dementia, a board-and-care home must have approval from community care licensing agencies. Dementia care communities are often more expensive than mixed communities or those with no AD residents.

  Skilled nursing care. Skilled nursing communities provide round-the-clock medical care, usually for persons with advanced dementia or with multiple problems. Skilled nursing is often the only option for low-income patients, however, because care can be paid for by Medicaid. Skilled nursing facilities are regulated by the state’s Department of Health Services. Some are dementia specific or have special dementia care units, and some have mixed populations.

  Financial Planning for You and Your Partner

  Learn about Your Partner’s Finances

  It is often difficult to come to terms with the need to take over your partner’s finances. It may feel very uncomfortable if this is a new role. In addition, someone with dementia can be paranoid about others looking into his or her financial affairs.

  Understanding and organizing someone else’s finances can be very complicated too. It may be even more difficult if the person has neglected financial matters or has used poor judgment due to dementia. On the other hand, if you have always managed finances as true partners, the task will be much easier.

  Learn about your partner’s complete economic situation: property, income, bills, and other debts and financial obligations.

  Consult an Attorney

  A good attorney is essential for making sound financial arrangements. Some attorneys specialize in elder law. The Alzheimer’s Disease Education and Referral Center (ADEAR) or the Alzheimer’s Association may be able to give you good referrals. You can also contact the local chapter of the Bar Association. The attorney should offer a complimentary first visit. If you have not yet consulted with an attorney in regard to your new situation as a caregiver, do so immediately.

  Design an Appropriate, Detailed Long-Term Financial Plan

  Developing a long-term financial plan is a time-consuming process. You will need to arrange for the management of day-today financial obligations, property, and investments. Some procedures used to transfer responsibility for financial assets are Durable Power of Attorney for Asset Management, Revocable Living Trusts, and Conservatorship of the Estate.

  You will also have to develop long-term care choices that are suitable for your partner. Make choices based on the financial assets available. Remember, you must plan for what may happen in the future, not just the current situation. Determine methods for payment of long-term care now—don’t wait. Remember to check into health and long-term care insurance benefits. The Veterans Administration may provide assistance if your partner is a veteran. Look at Supplemental Social Security benefits, long-term care tax credits, and in-home supportive services in addition to Medicaid if the patient’s income is low.

  Protect Your Own Financial Stability

  With your attorney try to establish financial arrangements that will not deplete your personal assets too severely but will still allow your partner to live comfortably and safely throughout the course of the dementia. You must be careful not to deplete your own resources too much if the person with dementia has little or no money of his or her own. Your attorney and long-term care advisors can help you decide on the best financial arrangements. Keep in mind your other financial responsibilities. Not only must you care for your partner, but you must also maintain your own financial stability and that of any other dependent family members.

  If you are a spouse, assets you hold alone are not at risk, but Medicaid will not help with your partner’s long-term care and other medical expenses until you spend some joint assets. You will be able to retain your home, car, and certain cash reserves and investments. You must consult an attorney. There are many ways to protect your fair share of your assets. You do not need to become impoverished to get help with your partner’s care. For example, you might have made promises to a parent or spouse in regard to long-term care which are difficult to keep when you are confronted with the realities of dementia care.

  Loretta and her husband, Anthony, had promised each other that they would stay close and take care of each other until they died. As Anthony’s Alzheimer disease worsened, however, he became very agitated and often did not recognize Loretta. When he didn’t, he would often order her out of the house, and he even called the police a few times. When he took medication for his anxiety and delusions, he became very lethargic, and she was unable to give him enough assistance with his daily tasks such as dressing and bathing. Her son came and helped as often as possible, but he lived in another city, worked full-time, and had his own family responsibilities.

  Loretta became very depressed. A friend suggested a large assisted living facility nearby, but it was expensive, and Loretta felt she would be breaking her promise to Anthony if she placed him there. An additional problem with placement was that, though she had enough money to live on, she calculated that she would eventually have to dip deeply into savings and might have to sell her home to keep him there. (Remember, Medicaid will not pay for assisted living.)

  Loretta also had an ill sister who lived far away, and Loretta wanted to go see her a few times while she was still able to enjoy visits. These visits were an additional expense that she could not afford if she placed Anthony in the facility, but what would she do with Anthony while she was gone? She tried leaving him with her son twice, but Anthony became extremely upset and tried to leave. It frightened the grandchildren, and Loretta did not want them to have unpleasant or frightening memories of their grandfather.

  In long talks with her son Loretta finally agreed that neither she nor her husband had expected an illness like Alzheimer disease and that it was not safe for either her or Anthony for him to remain home with her anymore. She and her son consulted a financial advisor and arranged her finances so that she could have enough to live on and keep her home if she placed him in a smaller and much more modest board-and-care home. She transferred some assets to her name only and arranged for her son to be conservator for her husband. She trusted her son’s judgment and knew he would consult with her on all decisions. The conservatorship relieved her mind of the worry about what would happen to Anthony if she became ill and relieved her of the strain of sole responsibility.

  Loretta felt she kept her promise to Anthony, at least in part, by visiting him at least twice a week and by taking him on outings that were fun for both of them. She also made unannounced visits to keep a close eye on the care Anthony was receiving. Her financial arrangements left her with enough money to visit her sister several more times, even though she had to live more modestly in other ways. Her son made sure he visited his father more frequently while she was away on these visits.

  Pay attention to the details when consulting professional advisors (see box 2-1). There are agencies and other sour
ces that will help you with your planning and will provide you with good support:

  • local and state aging services departments

  • the Alzheimer’s Association (local and national)

  • local adult day care and residential care settings specializing in dementia care

  • books, journals, Web sites, and national associations such as the American Society on Aging

  * * *

  Box 2-1. Dealing Effectively with Attorneys, Physicians, and Other Professional Advisors

  When you work with professional advisors, you need to be well prepared. Here are steps you should always take:

  1. Write down all information during any important phone calls—names of those to whom you speak, spelling of names, job titles, addresses, phone numbers, dates and times of calls, and summaries of the conversations. Use a log you can keep for reference, not just the closest sheet of paper! Also, keep with the log any correspondence related to the matters you are investigating.

  2. When making an appointment, inform the office if you will need to ask a lot of questions during the visit. They can then allocate time accordingly.

  3. Ahead of time, write out questions you need to ask.

  4. Ahead of time, assemble any documents or other material you will need.

  5. Begin an appointment with a brief overview of the reason for your visit or call. Try not to get off topic. Keep questions short and to the point.

  6. At an appointment, write down instructions you receive and responses to your questions. Also, repeat important information back to the person you are conferring with, asking whether you understood correctly. Don’t rely on memory for later recall—perfect recollection is never possible, even though we sometimes like to think it is!