Ask an Expert about Alzheimer's Disease
My mother hoards food in her room and in her pockets. Why does she do this and what can I do about this behavior? [ 01/17/11 ]
Hoarding behavior in dementia patients is a bit different than the hoarding typically associated with obsessive compulsive disorder (OCD). Alzheimer's disease (AD) patients hoard food or other items mostly likely due to anxiety, fear, insecurity, or confusion. The hoarding is a sort of a comfort to the AD patient, as the action of gathering and hoarding often calms their anxieties. Also, unlike OCD hoarding, persons with AD who hoard typically hide the items or keep them on their person (such as in pockets, purses or bags they carry around) because they fear that someone might steal their precious possessions (a delusion). However, food hoarding could potentially be dangerous should your mother eat spoiled food. It also is unhealthy because it can attract insects and other pests.
Learn where your mother's hiding spots are in her room. When you are with her, try to engage her attention in a different activity—preferably outside her room if possible. While she is out of the room, remove any unpackaged or perishable food items. You might need the help of another person for the distraction part of this plan. But be aware that sometimes dementia patients can become distressed and agitated when their hoarded possessions are removed or uncluttered. This is why it is important to keep her engaged in other positive activities to keep her from rummaging for her hoarded food. Unless the space in your mother's room is limited or the food items are stored in unsafe locations (on top of a radiator, in front of the door to the bathroom, etc.) you could also try “replacing” several of the unpacked and/or perishable items with a small item of non-perishable food. This way, your mother will still have a small “stockpile” of food to help ease her anxieties and fears. You will probably have to repeat this process every day or so (depending on the severity of the problem).
As for the food stored in her pockets, if possible try to purchase duplicates (or even triplicates) of the clothes she most favors hiding food in (sweaters, robes, etc.) You can then switch out the clothing item containing the food with the “clean” clothes when she undresses for bathing or bed, etc.
My wife is in a retirement home for Alzheimer's disease patients. On some days, she is docile and easy to handle; however, on other days she is very stubborn and difficult to the point where she will actually fight to get her way. I would like to take her home for a holiday dinner, and would like your input concerning the best way to manage her agitation and unruliness. Is it ever appropriate to hold her by force? If not, what can I do? [ 01/14/11 ]
When a patient with Alzheimer's disease becomes unruly, it is often because she is pushed beyond her limit to cope with a situation. Your wife may act up when she does not understand what it is that you are asking her to do and is confused. She may also be frustrated that she cannot do something (or do something as well as she used to) and therefore lashes out at you. Unless your wife's aggression is so extreme that she may cause harm to herself or others and therefore needs to be restrained, it may be best to avoid physical struggles with her because either one or both of you may become injured in the process.
However, there are a number of things you can try before it escalates to this level. Mostly, it is important to establish good communication with your wife because this may alleviate some of her frustration and confusion. Yes, you may have been married for a very long time and you might say, “I already know how to talk to her!” But don't forget that the rules have now changed. Your wife cannot reason the same as she once could, and as her memory deteriorates, she may not be able to hold multiple steps of an activity in her head at the same time. Therefore, the following suggestions may be of help:
- First, try asking your wife to help you with whatever it is that you want her to do. All people, even Alzheimer's patients, like to be asked to do things, not told what to do. Everyone likes to feel needed, so if she thinks that she can be of assistance to you, you may find she is more willing to cooperate. Don't forget to praise her for her efforts.
- When you speak to your wife, look her directly in the eyes and explain what is going to happen clearly and simply. Try to avoid length explanations.
- Break up tasks into simple steps. Instead of saying “Get out of bed”, say “Swing your legs over the side of the bed, put your feet on the floor, and stand up.”
- Ask questions with yes/no answers or offer simple choices for answers. Avoid open-ended questions. For example, instead of asking “What do you want to do today?” ask “Do you want to sit in your room or take a walk outside?”
- Maintain a pleasant and calm tone of voice. Sometimes how you say things is just as important as what you say.
- Allow her to make some mistakes. It does not matter if her socks do not match or if her hair isn't brushed nicely—so long as her shoes are on the correct feet and her pants aren't on backwards, the other things can be ignored. Do not belittle her if she gets something wrong; just try to ignore it (if it's not very important) or suggest trying to do it another way (if it is something significant).
- If your wife is uncooperative at first, leave her alone and try again later using a different approach. This will allow you an opportunity to calm down and reassess the situation if you are feeling frustrated. Don't continue to push her if a technique you are using is not working.
By following these steps, you may be able to gain better cooperation from your wife, and thus potentially lessen her stubborn spells.
As for the holiday gathering, you will have to gauge your wife's behavior on the day of the event to determine if it would be wise to take her or not.
For this reason, you should speak to the host in advance, warning him or her that 1) your wife might not come if she is in an uncooperative mood, and 2) if she does come, your visit will most likely be a short one.
Social gatherings, even if there are only a handful of people, can be overwhelming and sometimes frightening for a person with Alzheimer's disease. The person can become confused and over-stimulated by the noise and commotion, which can lead to anxiety and agitation.
While social interaction in general is good, it is best to try to tailor the interaction to suit your wife's condition. When you arrive at the dinner, find a quiet place where you can take your wife. This will be her little sanctuary away from the noise and confusion of the party. For example, ask in advance if a separate room or secluded area can be made available for your wife to sit in. If people want to visit with her, bring them to her a few at a time. And even if you think that your wife will know who these visitors are, be sure to introduce each one and provide some details or a brief description of who they are. For example, you can say “This is Cathy, our niece. We visited her last summer and had a good time walking around the lake by her house.” Not only will this help to jog your wife's memory about who the person is, but it can also make for an easy conversation starter.
My dad was placed in a nursing home 3 months ago, and my mom has been visiting him almost daily. Last weekend, she told me that she was visiting him in the afternoons, and because he is usually always asleep then, she said that she was going to "wean" herself from visiting him. I asked her why she just doesn’t visit him in the mornings when there is a greater chance of finding him awake, which was immediately met with hostility. She said that it is hard for her, and that I need to support her. I feel like she is abandoning my father. I suspect she is looking for some sort of approval from me, but all I can say to her is that it is "her call." I don’t think it is my place to approve or disapprove of her behavior. I’m doing my best to accept it. I live 4 hours away, so I have seen dad and how responsive he remains. But, my siblings sympathize with mom, and see no need for her to visit him. Do you have any suggestions on how to handle some of these delicate family dynamics? [ 01/13/11 ]
Even under the best of family circumstances, dealing with the ramifications of a loved one having Alzheimer's disease is challenging for everyone. Although you say that you are trying not to judge your mother's behavior, based upon your word choices it is evident that you feel her choices are not in line with your own opinions (abandoning” your father; your mother's “character flaws”, etc.) Your mother may sense this as well, given that she responded with hostility to your suggestions. Everyone has different coping mechanisms. Your mother's is clearly different from yours and this is neither a good thing nor bad thing—it just is.
Listen to your siblings and go easy on your mother. It must be terribly frightening for your mother to realize that her lifetime friend and lover is slowly being swallowed by this horrible disease, and that soon she will be alone. Yes, he is your father and you, I am sure, are also horribly saddened and frustrated by the knowledge of the disease, but this realization may be unlike that of your mother's. Sometimes the children of Alzheimer's disease patients find it easier to cope with their parent's disease than the patient's spouse does, particularly if the children are not engaged in the day-to-day care of the parent. You live 4 hours away from your father, whereas up until 3 months ago your mother lived with your father and experienced first-hand how the disease was changing him. She now visits him nearly every day. She is closest to the situation, and therefore probably is most aware of how the disease has ebbed away at his cognition and memory. Undoubtedly, this is painful for her to witness (as it is for all of you), and her way of coping with this is to slowly emotionally distance herself from your father, most likely as a form of self-preservation. Again, this is neither good nor bad; it is simply her method of dealing with a heartbreaking, complicated situation.
At the moment, you may be experiencing more emotions than you are aware, and these may be what are driving a wedge between you and your family. If you have not already done so, you might want to consider talking to someone independent from your family who can provide you with unbiased advice and support, such as a therapist, clergy, or grief counselor. You and your family might also benefit from talking to a support group for families affected by Alzheimer's disease. You can search for Alzheimer's support groups in your area by visiting our Resources section, such as under the Caregiving and Caregiver Support heading in Helpful Organizations.
Regardless, if you truly want to maintain family harmony, calmly tell your mother that while you both have differing opinions, you know how difficult it must be for her and therefore you will support her decisions no matter what. But don't say this unless (or until) you really mean it. Good luck and I hope that this experience will strengthen you and your family and pull you all closer together.
My mother was diagnosed with vascular dementia 4 years ago. Last September, she was moved from her older nursing home to a newer one that has a dedicated dementia unit, because the original home could not handle her anymore (she kept going outside and was disruptive with other patients). I have noticed a rapid decline since her move to this new nursing home, and I am wondering if this is just the progression of the disease or if the changes are related to her medications. I noticed changes immediately after she was prescribed Depakote, as she no longer made sense when she spoke. She is also on a very small dose of Seroquel. She has lost about 20 pounds in the past year, but she has been maintaining her current weight for about 4 or 5 months now. I would appreciate any information that you give me. [ 01/11/11 ]
The "non-cognitive behavioral symptoms" or NCBS of dementia often create more day to day difficulty than mere memory loss, as your mother's condition illustrates. She may need the attention of a skilled geriatric psychiatrist to sort out which of the many causes of disruptive behavior is most important in her particular case. Just as you point out, her disruptive behavior could reflect the progression of her dementia, the occurrence of a separate medical problem such as a stroke or a urinary tract infection, the development of a separate psychiatric problem such as depression (which is very common in this situation), the move to a new nursing home, the adverse effects of divalproex (Depakote) or quetiapine (Seroquel), or anxiety. With all of these choices, each of which would suggest a different course of action, some careful analysis must go into diagnosing your mother's condition. Her disease may make it impossible for her to rely on memory and new learning to improve her behavior, but a successful dementia unit often can apply behavioral methods to reduce disruptive behavior. If these fail, one or more of the available medications may be helpful. I hope this information will help you work with your mother's nursing home staff and a good consultant to improve her behavior and the quality of life for her and her caregivers.
I live in rural India, and my father was admitted to a hospital for an angioplasty. Subsequently, a blood clot developed, traveled to his brain and then dissolved. After that, he has exhibited classical signs of Alzheimer’s . After lunch, I give him .25 milligrams of alprazolam so that he can sleep, but this often does not help. After dinner, I give him .50 milligrams of the same medication, and this does seem to help him sleep through the night. He often has high levels of anxiety for approximately three hours before dinner and we don’t know how to manage it. The medicines prescribed to him by psychiatrists and neurologists increased his anxiety and prevented him from sleeping. He requires assistance in walking and changing. Should I increase his sedation? We tried giving him 1 milligram of lorazepam at night but it only disoriented him and kept him awake. [ 01/10/11 ]
I am sorry for your father's and your family's misfortune. His behavior may suggest Alzheimer's disease, but the occurrence of these symptoms after angioplasty and a clot to his brain suggests the possibility of vascular dementia as an alternative. Either way, the treatment of his anxiety appears to be the primary concern. Although I cannot give specific advice about the best medications for your father without knowing many more details of his health, I will suggest that you speak with his doctors to find a better approach than the use of alprazolam. This benzodiazepine sedative, like lorazepam, often reduces anxiety but at the same time interferes with aspects of mental functioning such as concentration and memory. Furthermore, a rebound anxiety may occur as one dose wears off and the next has not yet been given. Although behavioral approaches are considered the safest for addressing anxiety and agitation, many clinicians now also use antidepressants such as citalopram, antipsychotics such as quetiapine (though metabolic concerns may limit appropriateness of this choice), or anti-seizure medications to treat the symptoms you are describing.
My father is 90 years old and has Alzheimer's disease. He currently lives alone in a senior complex about 8 minutes from my home. Although he can feed, dress, and bathe himself, I take care of his other needs. When he makes a statement in a group of people (such as at church) that is inaccurate, should I gently correct him? Would it be better to allow his inaccurate statements to go uncorrected? [ 01/07/11 ]
Correcting your father's inaccurate statements, particularly in front of others, may make you feel better but it will probably erode your father's self-esteem or even make him upset in the long run. Anyone who knows your father and has regular contact with him should already be aware of his diagnosis (or should be informed in private) and hopefully will be tolerant of his inaccuracies. Don't worry about what the store clerk or a waiter might think if he says something untrue—it really doesn't matter because you'll probably never encounter these people again.
Consider instead just going along with what he says, especially if the erroneous details are irrelevant in the grand scheme of things (a blue car instead of a red one, etc.) If your father says something grossly inaccurate that confuses the listener, you can say something like “And all this time I thought Beth was a dentist, not a truck driver. It shows you what I know!” You can also try asking your father for clarification about what he said by giving him a simple choice, such as “Did you work in India or Indiana, Dad? I always get those mixed up.” If you play the fool or act like you're the one with the memory problem, then it will take some of the spotlight off of your father and possibly give him an opportunity to correct himself without losing face.
My doctor says that I have white flakes showing up in an MRI of my brain, but he did not explain further. What do the flakes mean? [ 01/06/11 ]
Your MRI may have shown 'flecks' of brighter areas on the MRI that reveal a condition called 'white matter disease.' There are many different causes of 'white matter disease,' and some are more serious than others. In older adults, disease of the small blood vessels can lead to characteristic 'white matter disease findings' on the MRI. When the small vessel disease is serious, it can be associated with cognitive changes, but the presence of mild white matter changes does not necessarily mean that severe cognitive impairment is present. Some causes of 'white matter disease' are treatable, so your doctor should discuss this finding with you further. Making the most likely diagnosis will require your doctor to consider your age and medical history as well as any current symptoms. He or she may also refer you to a neurologist for a more detailed further examination.
My wife has been taking Namenda and galantamine for about 4 years. Is there any evidence that these medications are still working to slow the progression of her Alzheimer’s disease? [ 01/06/11 ]
Galantamine, the generic form of Razadyne, is a cholinesterase inhibiting medication approved by the FDA for treatment of mild to moderate symptoms of Alzheimer's disease (AD). Namenda, the brand name for memantine, works through a different mechanism that improves glutamate neurotransmission, and is also approved by the FDA for treatment of moderate to severe symptoms of AD. Studies have shown that these medications continue to benefit patients for at least up to 2 to 3 years. An encouraging study found benefits of combination therapy in AD patients followed for an average of 30 months, but we don't have enough information to prove that treatment for 4 years remains beneficial. Clinicians who continue these medications do so based on the absence of other helpful treatment approaches, the belief that such combination treatment is not harmful, and the possibility that continued treatment may help in various ways such as slowing cognitive deterioration, slowing loss of ability to perform activities of daily living, delaying the emergence of disruptive behaviors, and reducing caregiver burden. On the other hand, some patients and clinicians decide to discontinue treatment on the basis of unwanted side effects such as fatigue or dizziness, apparent lack of benefits, or cost considerations.
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Last Review: 04/29/13