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Frequently Asked Questions

Caregiver stress?
Hurting those closest
Shifting perspectives in caregiving
Causes of Alzheimer’s disease
Alzheimer’s warning signs 
Music and caregiving
Caregiver worries


Caregivers Stress?

Q. I have been caring for my 84 year old mother who has Alzheimer disease which is getting steadily worse over the last couple of months. I am now concerned about myself. It’s not so much the forgetfulness which at 58 I see in many friends but rather aphasia, which I see is a specific type of dementia although it’s not very common I have always been a natural speller and could pronounce most words. I seem now to have word finding difficulty with regular words not just names and I often misspell common words in dumb ways when I’m emailing. I seem to catch it when I proofread but it didn’t used to happen. I know that as a caregiver I’m under a great deal of stress and one of my main goals right now is to reduce that by exercising more and detaching some from my mother. I have discussed this with my partner and he says he doesn’t notice it. I suppose I should be evaluated.

A. Since your partner has not noticed anything abnormal in your every day speech there is a good chance you do not have a serious problem, but I agree that an evaluation by a neuropsychologist would settle the issue.

Hurting Those Closest

Q. How come people with dementia so frequently treat the close family members who take care of them the worst? It has been my considerable experience that the close family members (at home care) get the worst treatment and yet they are the ones getting hit and verbally abused. One’s most important loved ones get the brunt of bad behavior.

A. This is a common observation. For example, the primary carer, whether it is a family member or professional, is often the person who becomes the target of a delusion such as the conviction that the person’s money is being stolen. There are probably several explanations for the observation. If physical aggression is indiscriminant, that is, not really targeted at an individual, and if it is precipitated by close personal contact, for example when being bathed, then it would be more likely that the person who spends more time with an individual is more likely to be yelled at or hit. Keep in mind that the person with dementia often has severe memory impairment and so may not know exactly who is providing most of their care. From the care provider’s point of view the person may seem “ungrateful,” but being “grateful” requires that you remember what has been happening recently. Physical aggression can be minimized by trying to recognize the very earliest signs that the person is getting upset. Their face may become flushed, they may develop a frightened an angry expression, or seem restless. It is best to stop whatever you are doing with the person (dressing, bathing, feeding or just talking) and return a minute later.

Shifting Perspectives in Caregiving

Q: I have been taking care of my 88-year-old father for three years now. When I first started, I thought I would be able to save him somehow and keep his health from deteriorating. However, as his condition began to worsen over the past few months and he began to spend more time in bed, I quickly lost all hope. I still offer the best care that I can for my father, but I am not finding the joy in my daily help that l once did. I don't know what to do in the face of my father's deteriorating physical and mental condition. Any suggestions would be welcome.

A: An important aspect of educating caregivers is to help them have realistic expectations. Unfortunately, we do not yet know how to slow the rate of decline in Alzheimer's disease. What we do know is how to improve the well-being of the person with the disease and of the caregiver, how to lessen the frequency and severity of behavioral and psychiatric symptoms, how to maximize the medical and social care of the person with the disease, and how to modestly improve cognition with medications.

The most important aspect of care is that we provide a loving and supportive environment for the ill person, and it certainly sounds like you have done that. Make sure that you are getting your own emotional needs met as well. When you do all these things to the best of your ability, you have done everything possible to maximize your father's quality of life.

Cause of Alzheimer’s Disease: Amyloid Plaque or TAU?

Q: I am confused as to what causes Alzheimer’s. With experts going back and forth on the issue of beta-amyloid plaques and tau tangles, what role do you think they play in Alzheimer's disease?

A: The cause or causes of Alzheimer's disease have not been discovered despite intense study for more than three decades. It is clear that genetics plays a role and accounts for 30 to 60 percent of cases, but just how genetics factors into the disease process has not been determined.

The leading theory at present is referred to as the amyloid hypothesis. It relies on the finding that a protein called beta amyloid (also called amyloid beta), particularly a form of this protein that is 42 amino acids in length, accumulates in the brains of people with Alzheimer's disease and is found in one of its pathological brain lesions, the amyloid plaque.

Genetic and experimental evidence also has been proposed to support this hypoth­esis, but it remains unproven. Thus far, attempts to interfere with the deposition of amyloid beta-protein in the brain and dugs designed to remove this protein from the brain have not altered the disease in humans.

While the development of an effective treatment or prevention does not require the discovery of the cause of a disease, knowing the cause increases the likelihood that a rational treatment will be developed. Therefore, this line of research is very important.

What are the warning signs of Alzheimer’s Disease (AD)?

Q: I take care of my 83-year-old mother, who has had AD for the past five years. At a recent meeting of my AD support group, I was told there are 10 warning signs of AD. Based on your years of experience, is there one symptom that stands out in your mind as the definitive one that should lead someone to suspect that they might have early signs of some dementing disease?

A: This is an important question that researchers have struggled with for 20 years, because it addresses the question of earlier diagnosis. The simple answer is, "No, there is not a single symptom or test that can accurately determine whether someone does or does not have early Alzheimer's disease."

One reason for this is that a clinical diagnosis of AD requires at least two distinct impairments in thinking --- one in the area of memory (specifically, an impairment in the ability to learn new verbal information) and the other in language (what doctors call aphasia); doing everyday learned activities such as dressing, writing, or driving (an impairment called apraxia); visually recognizing or perceiving information (called agnosia); or organizing information (called executive dysfunction).

As a result, forgetfulness alone is not adequate to diagnose AD, but it is concerning if a person repeatedly forgets important information, events, or conversation. If a person develops difficulty doing a task such as balancing the checkbook or becomes lost while driving or walking in a familiar place, that, too, would be very concerning.

The same challenge has arisen in the development of a biological test to detect early AD. Aging can be associated with changes in the brain, and at the beginning of AD, it is difficult in a single individual to differentiate between normal aging­associated changes and AD. What is promising is recent research showing that a combination of findings on several types of tests --- for example, brain scans that identify shrinkage in certain areas, brain scans that measure blood flow or the usage of oxygen, spinal taps, and brain scans that measure the amount of beta-amyloid and tau in the central nervous system --- together might accurately detect early disease.

Music and Caregiving

Q: My husband was diagnosed last year at the age of 76 with frontotemporal lobe dementia. Caring for him has been extremely difficult, but I have managed with the help of our two daughters who live nearby. Robert has "calmed down" recently, and we think it all has to do with The Sound of Music, which he watches on DVD as frequently as five times a day. It seems like electronic babysitting, and my daughters and I feel somewhat guilty that we are not doing more for him, but Robert seems genuinely happy. Should we be doing more?

A: If he is enjoying it, then it is the right thing to do. It is not always easy to know that you are doing "everything possible," and people often have unrealistic expectations. I believe that helping people with dementia enjoy "the moment" is the most important step that we can take to help them. It certainly sounds like you are doing that.

Caregiver Worries

Q: My husband and I are out of the home most of the day at work and my mother, who has AD and now lives with us, is being cared for by a professional caregiver who was recommended by an agency. My husband is not the most trusting of souls, and he wonders how we can ever be sure that my mother is being cared for and not abused when we are not around. While everything is fine for now, as her condition worsens and she becomes harder to handle, my husband is fearful that the caregiver will really be pushed to the limits and might mistreat my mother. What can we do to make sure that our worst fears are not realized?

A: While abuse does occur, it is not common, and I do not believe it is appropriate to put hidden cameras or recording devices in place without evidence that there is a problem. In fact, if there is evidence that a problem is occurring, you should notify the authorities and make a change in caregivers.

Having said that, there are signs or circumstances that should prompt concern about abuse. Unexplained bruising or bruises that are in the shape of a hand should raise the question of abuse. You can get a sense of how a person handles difficult situations by observing him or her in routine interactions. Are they patient, do they recognize that the person has impairments, do they talk to the person with the appropriate tone in their voice, and do they try multiple approaches when a person is resistant or unable to do something?