The following is an excerpt from “Is It Alzheimer’s?: 101 Answers to Your Most Pressing Questions about Memory Loss and Dementia” by Dr. Peter V. Rabins
Q62. My husband was diagnosed with Alzheimer’s disease about a year ago, but he continues to deny that he has anything wrong with his memory. He is able to drive and be left at home alone without any problems. Is there anything I can do to convince him that he has an illness that affects his memory? Is this denial?
A62. More than one-third of people who have been diagnosed with Alzheimer’s disease are unaware of their difficulties or deny that they have problems when told of their diagnosis. An even higher percentage of people with Alzheimer’s disease will say things like, “Of course I have memory trouble. So does everyone my age.” This is also evidence of unawareness.
In my opinion, this unawareness is usually a symptom of Alzheimer’s disease (see Q94). One reason for concluding this is that rates of unawareness are much lower in people who have vascular dementia or Huntington disease of the same severity. Even if I am wrong and this unawareness or denial is the result of an inability to “accept” the diagnosis, the bottom line is that the person either is unable to know or does not want to know. In either case, trying to “convince” him is not appropriate and can be upsetting to him.
Unfortunately, this unawareness can lead to problems if he should not drive, go out alone, be home by himself, pay bills, babysit, or take medications on his own.
I recommend that you always remind your husband that the diagnosis was made by his doctor. You could say, “Don’t forget, Dr. Smith is the one who made the diagnosis.” That way, if he disagrees, you can say, “Well, we are scheduled to see Dr. Smith in a few weeks. You need to tell him directly that you disagree.” If there is something he should not be doing because it is dangerous you can add, “In the meantime, I don’t think you should [whatever the activity is, such as go walking by yourself] until Dr. Smith gives the go-ahead.”
Q63. How do I start a conversation with my wife, who has early-stage dementia, about getting additional support when she eventually needs more care?
A63. The answer depends on whether your wife is aware of her diagnosis and can appreciate that she has a problem. If she is able to recognize that she has dementia or a memory problem, then I suggest you have a general discussion about future plans. A good place to start is either establishing durable power of attorney documents and writing a will, if you and she have not already done so, or reviewing these documents, if you already have them. This discussion can provide an entrée into talking about and planning for a variety of possible scenarios for both of you in the future.
Use her response to guide how much detail you can go into. If she is becoming restless or upset, then back off a little. In general, I recommend trying to acknowledge her being upset (“I know this is hard to talk about. It is for me, too.”), but if that further upsets her, then stop and restart the conversation another day. If she is able to talk about these issues, it may be helpful to discuss them as possible situations (“What if I get sick or am not able to help you as much as I need to?”). If her response is, “Oh, that will never happen,” it is fine to say, “I hope not, but what should we plan to do if I can’t give you the help you need?”
Such conversations are difficult for most people. Dementia can render some people unable to participate because of impaired reasoning capacity, because they become upset easily, or because they lack insight.
However, they still may be able to discuss these issues in a general way. You might try stating your preference for what you would like and then ask her what she would do. For example, “If I got really sick and needed more help than you could give, I would want [whatever you would want, such as to be cared for by home health care workers in our house]. How about you?”
Unfortunately, some people are not able to discuss these issues even when their dementia is mild. If you have had prior discussions about these issues, consider using those conversations as a guide to her preferences.
Q64. My 10-year-old daughter has asked several times why her grandfather, who has been diagnosed with Alzheimer’s disease, has changed. Should I discuss his diagnosis? What is she likely to understand?
A64. I do think you should talk with her and use her responses to guide you in deciding how much detail to provide. At a minimum, explain that what she has noticed is caused by a sickness. I suggest emphasizing that he loves her and that the family still loves him. Highlight the things they enjoy doing together. If she asks about the sickness, it is reasonable to tell her the name of the disease. There are several books written about Alzheimer’s disease for children and teens. She might want to read one alone and ask questions, or she might want to read it with you.
Q65. My 78-year-old father has cared for my mother for almost 3 years. I have suggested several times that he attend a support group, but he always replies that he doesn’t need it. Is there anything I can say to him to convince him?
A65. I believe that support groups are a wonderful resource. I have always encouraged the caregivers I interact with to consider going to one. Support groups are a great source of information about community resources and potential solutions to challenging problems. They are also a source of emotional support from people who are facing similar challenges.
That said, support groups are not for everyone. Some caregivers are doing well and don’t need more support or information. Other caregivers are too “private” for the experience that support groups offer. If your father seems to be doing well, I don’t think you should try to convince him to go to a group.
On the other hand, if he seems demoralized, tired, angry, or overwhelmed, I suggest you gently share these observations with him and tell him that there are many sources of support available. Among them are family members, friends, clergy, counseling services, and support groups.
If he seems to be struggling emotionally I also recommend telling him that you are concerned about both your mother and him, and that his getting help will be good for both of them. If he is worried about the cost, find out if there is a charge; most support groups are free. You could offer to attend the group with him to test it out. If he continues to resist getting help and he seems to be doing worse, you might ask if he would consider respite care or long-term care for your mother.
Q66. My mother has always been a cheerful person and has done well as a caregiver for my father for several years. Recently, though, she has seemed sad and depressed. She talks much less on the phone, doesn’t seem to want to see my children, and cries at the drop of a hat. I told her I was concerned that she was depressed, but she passed it off as “just part of being a caregiver.” What do you think?
A66. Although being a caregiver doubles or triples the risk of feeling demoralized, the majority of caregivers never develop clinical depression. The fact that your mother seems “changed” from her usual self does suggest that she is experiencing clinical depression; her diminished energy, avoidance of usually enjoyed activities, and frequent crying further support this.
If a person with dementia can carry a phone, their primary caregivers should put their own phone number and that of other emergency contacts in “ICE” (In Case of Emergency), under “favorites,” and in the phone’s address book under “wife,” “son,” “daughter,” or “friend.”
I suggest telling your mother several things. First, tell her that you see her as a changed person and that this is not a usual outcome of being a caregiver. Tell her that she has certain symptoms (listed in the previous paragraph) that suggest she has clinical depression. Also tell her that you are only recommending that she be evaluated, and that, if you are wrong, then you will be relieved. Finally, tell her that there is strong evidence that depression responds to treatment and that research has shown that when depression in a caregiver improves, the mood and behavior of the person with dementia also improve.
Q67. Since this is anonymous, I will tell you that I have yelled at my husband twice in the past month. He has dementia and I know it’s wrong, but it happened so quickly that I couldn’t control it. I would never hit him, but I feel so guilty. Do you think this means that I should place him in a nursing home?
A67. Guilt and frustration are very commonly experienced by caregivers of chronically ill people, particularly caregivers of people with dementia. Guilt may be a sign that you are overwhelmed, so you should ask yourself whether you need more help in the house, a brief vacation, or the help offered by a support group. I am guessing that you are not in a support group or, if you are, that you haven’t mentioned that you yelled at your husband. If you had, you would likely have found that almost everyone in the group had done the same thing on occasion. And, like you, everyone would have expressed regret about it. Frequent losses of temper suggest that a caregiver is overwhelmed, but occasional episodes are so common that I consider them normal. Finding an outlet for your frustration such as talking with friends, joining a support group, or discussing the matter with clergy can help, as can taking time away from caregiving. If the problem continues, consider talking with a counselor. If these steps don’t help, you should think about alternative living situations.
Q68. How do you support a caregiver long distance?
A68. Only about half of family members live close to a loved one who has been diagnosed with Alzheimer’s disease. In most circumstances, when there is a partner living with the person or there are family members nearby, they shoulder most of the caregiving responsibilities. I think this is important for out-of-town family members to keep in mind, because it is often difficult to tell from a distance exactly what the issues are.
An important first step for people living out of town is to acknowledge that those living close by are most likely to know about the day-to-day issues, both positive and negative. Realize that both the person with the disease and those providing care need support. I suggest that you check in by phone regularly. I think phone is better than text or email, because it is more personal and you can detect some things by hearing that you cannot in writing. If you do check in regularly, be sensitive to the possibility that the caregiver might feel that you are checking up on them. If this might be the case, reassure the caregiver that you want to be kept in the loop and want to help, but that you are not questioning their ability. If you are concerned that the caregiver is overwhelmed or no longer able to provide what is needed, then you should try to visit in person to assess the situation.
I believe strongly that the more facts people have, the more likely they are to be able to figure out what needs to be done. Ask the caregiver to tell you about the results of visits to the doctor and other professionals after each contact. Recognize that many caregivers who are “on-site” or close by believe they are most knowledgeable about the situation. This may well be true. Ask about their observations and opinions.
Visit as often as possible to see for yourself how things are going and to assess what is needed. If possible, provide some caregiving yourself and give the person providing most of the support some time off. Make sure that your visit is not adding to the caregiver’s responsibilities.
Encourage the local caregivers to utilize available agencies and supports. Be sensitive to the possibility that they might see this as admitting defeat. Recognizing that regular caregivers may be reluctant to use extra help is important, because you might be able to convince them that getting this help is best for both the ill person and the caregiver. If the caregiver believes that no one can do as good a job as they do, empathize with their dilemma—they may be correct, but getting extra help might still help things go more smoothly. You may need to repeat your offer to relieve the caregiver more than once.
Q69. How do I find good people to help me at home?
A69. Getting help at home can prolong a person’s ability to remain in their own home, a goal of almost all people with dementia and caregivers. Some caregivers need help with tasks such as bathing, dressing or moving a bed-bound person, while others need help with meal preparation, cleaning the house, or respite from caregiving. All of these are valid reasons to get help at home. Of course, there are many others.
Many agencies provide this kind of help. If you know some- one else who has obtained help, ask them. They may be able to recommend an agency or a specific person who has helped them, or refer you to someone who knows what or who is available. If you are in a support group, ask people if they can recommend someone or some agency. A social worker may know of an agency that pays special attention to the needs of people with dementia.
Make sure the agency is bonded. This means that the agency has reviewed the credentials of the people they hired and has made arrangements for you to be reimbursed if theft or financial abuse occurs.
If you are unhappy with the person, let the agency know. Tell them directly what your concerns are, and ask the agency if there is someone else who can better meet your needs. If you hired a person directly and are unhappy with their services, you can terminate them and try to find a more suitable person, but keep in mind it might take a while to find a replacement.
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