Alva S. Baker, MD, executive director of the Copper Ridge Institute, was online Tuesday, Nov. 1, at noon ET to discuss care for patients living with Alzheimer's disease and other memory impairing disorders, as well as support for the patients' families.
The Copper Ridge Institute is affiliated with John Hopkins University School of Medicine.
Baker, a certified geriatrician, has been medical director for EMA since 1980. His specialty areas are: medical care of the person with dementia, managing problem behaviors and care and support for caregivers.
From The Post:
Research That Hits Home (Post, Nov. 1)
Practical Advice for Caregiving at Home Post, Nov. 1)
A transcript follows.
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Tallahassee, Fla.: My father in law is 80 and we recently had to transfer him from one dementia care facility to another due to his physical aggression toward a specific fellow resident. When a dementia patient's aggressiveness (including physical striking) is directed toward a specific fellow resident, or staff member, what are some of the suggested treatment methods to change this behavior?
Thank you
Alva S. Baker, MD: There are many approaches to managing physical aggressiveness. Non-pharmacologic techniques, such as structuring his day in a way that seems to provide him with the most equanimity, providing appropriate and adequate activities therapy, and ensuring adequacy of staff knowledge, skills and attitudes about managing aggressive behaviors, should be implemented and exhausted before moving to pharmacologic treatment. Many times, medication is necessary, but it must be used to treat specific symptoms he may be having and not just for sedation. Managing aggressive behaviors is often a challenging - and frustrating - problem for all concerned.
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Herndon, Va.: I am caring for my mother who has been diagnosed with early stage dementia. She has been given medications to help her disease, but they don't seem to be working. My brother and I are concerned about whether we should move her to assisted living from independent living in a home for seniors. They facility staff says they basically depend on the families to make the decision on when a resident should move to assisted living. What do you think are the warning signs that someone can't remain in independent living and should move to an assisted living arrangement?
Alva S. Baker, MD: This is often a difficult decision for family members. Most people are VERY adamant about staying 'at home', and family members are often conflicted about honoring those wishes and dealing with the reality of the situation.
Signs that a person with increasing cognitive impairment may need to move to a supervised and/or sheltered environment include two basic things: safety, and ability to perform self-care.
Safety issues include wandering which, with loss of judgment, may eventuate in the person being lost outdoors or trapped outdoors in inclement weather; walking down a street without awareness of traffic hazards; getting lost and ending up a great distance away before being located; amongst others. House safety - such as leaving stove burners on or forgetting food that is cooking - become equally important.
Self-care issues, including maintaining hygiene, sustaining social interaction, being able to prepare and consume adequate food and liquid, are often things which precipitate a person's leaving independent living for a safe and supervised home.
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Washington, D.C.: My mother is in a small group home for many of the same reasons your facility is so well regarded, namely the comfortable homey feel and caregiver attention. However, I struggle with placing her there/anywhere because her cognitive abilities fluctuate. How can we determine if she is happy/content and minimize the additional stress we've placed on her?
Alva S. Baker, MD: Sometimes it is difficult to ascertain the 'happiness' state of a person with dementia. Even some who complain all the time may be able to also report that they are, at least, not unhappy.
Some things you might take into account are:
1. eating patterns and socialability at meals
2. interaction patterns with staff and with other residents
3. participation in activities - frequency, amount of interest and enjoyment shown, amount of staff cueing or encouragement in getting her to attend
4. staff reports about her mood: is there apparent sadness or crying? does she frequently laugh and appear happy?
5. last and certainly not least: what does she say about how she feels?? I think you, who knows her best, need to listen to what she says and evaluate that within the context of the above and her lifelong (at least, as you know it) mood and state of happiness.
Hopefully, investigating these issues will help give you a sense of her state of contentness.
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Arlington, Va.: How many patients are at Copper Ridge? Do you know what the statistics are on people living with Alzheimer's disease in the U.S.? How would you assess the care for them on a national scale? Is enough being done across the country to help them?
Alva S. Baker, MD: At Copper Ridge, 60 people live in the Assisted Living section and 66 people live in the skilled nursing facility.
There are currently about 4 to 4.5 million people in the US living with Alzheimer's disease. This number is expected to grow to about 9 million by 2025 and about 14 million by 2050, unless there is a way found to prevent or cure the disease. This tremendous growth is related to demographics of the population in this country as the 'Boomer' sector of our population ages.
Most people with Alzheimer's disease are cared for at home. There is a tremendous need for education and the development of caregiving skills in both home and institutional caregivers. Optimum evidence-based caregiving methods have been developed, but the resources for widespread dissemination of those methods to caregivers are very limited at this time. Hopefully, more resources for this will become available in the future.
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Richmond, Va.: Where in Richmond could we find similar care to that described at Copper Ridge? My mother-in-law is at a facility near our home, but I think we could do much better for her elsewhere.
Alva S. Baker, MD: Unfortunately, there are very few facilities like Copper Ridge. I personally do not know of any in the Richmond area (which doesn't mean that there are none there). In looking for a facility that provides this kind of care, here are some of the things that you should evaluate:
1. What is the facility's mission and philosophy of care?
2. How are the staff trained in dementia care?
3. What is the activities program and how are interest and ability specific activities provided for the residents?
4. What is the facility's approach to managing disruptive behaviors (resistance to care, aggressive behavior, wandering, rummaging, etc.)?
5. What support is available to the residents in terms of medical physicians who are educated about dementia?
6. What support is available to the residents in terms of psychiatric care?
7. As a resident progresses through the advanced stages of illness, what is the facility's approach to end-of-life care?
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Washington, D.C.: Copper Ridge is an excellent facility -- I take my mother there for Hopkins appointments every couple of months. It's a very calm, welcoming, well-managed environment.
My family is a tightly knit, very ethnic household and Alz has really changed our family dynamic. My mother is reaching a stage where the need for some planning is necessary. My father is heavily in denial and refuses to see her condition declining, let alone freely acknowledging her Alz. Can you share a few recommendations to get around or work with my father's denial issues? They've been together for 56 years and while I'm sensitive to how painful it is for him, it's hard to let his comforts get in the way of my mother's future care. Can you help?
Alva S. Baker, MD: Denial on the part of the well spouse (or covering for the impaired spouse's challenges) is quite common. The well spouse has so much to lose: family unit if the impaired spouse must move to a sheltered environment; maybe even his/her home; acknowledging the disease and progressive ravages that it will cause.
Overcoming such denial may be very difficult. Sometimes it is possible to get the well spouse to start attending a support group, wherein peer education is a very powerful force. Having a family conference with your mother's physician may be of value. Gently, ever so gently, pointing out how your mother is no longer able to do the things she can't may be accepted by him.
Unfortunately, sometimes all of this leads to a family crisis, wherein you MUST do something for your mother's benefit. Hopefully, it will not get to that point.
I would suggest that you discuss this with the nurse specialist and the doctor when you are visiting the Assessment Clinic at Copper Ridge.
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Washington, D.C.: Can you please explain what "optimum evidence-based caregiving methods" are? Thank you very much.
Alva S. Baker, MD: We believe that persons with dementia do have a life. We believe that the humaness of the person with cognitive impairment must be valued. We believe that the residual abilities of the person with dementia should be honored and enabled.
In order for these tenets to be fulfilled, it is necessary that caregivers understand what dementia is, how it is different from normal aging, and how dementia may result in perceptive and behavioral changes in the impaired person.
Optimum care is care that is rendered in the context of the above and with the provisions discussed in questions earlier in his hour.
So, for example, it means that caregivers work with patients to assist and enable the patient to dress him/herself as much as possible, instead of just going ahead and dressing the patient. It means recognizing that persons with dementia may also having depression, and that diagnosing and treating that depression results in an improvement in quality of life for the patient.
'Evidence-based' means that research has been done about the caregiving methods and the outcomes they produce, with research evidence being accumulated to demonstrate that caring for persons in this paridigm provides better outcomes for the patients.
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Washington, D.C.: What is the most common concern that families have about caring for their loved one with Alzheimer's disease? How do you help the families?
Alva S. Baker, MD: Families need:
1. education. Families must understand as much as possible about the disease that is affecting their loved one and what might be expected as the disease progresses. Knowledge is power.
2. support. There is frequently a plethora of negative emotions scattered throughout the family: guilt, grief, resentment, shame, frustration, emotional exhaustion. Family members need to be able to acknowledge these and deal with them if they are going to have healing and be able to provide the patient and each other with the love and support that everyone needs.
Frequently expressed family concerns include the diagnosis and prognosis of illness; managing the patient's needs; managing finances; just what do do next.
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Alva S. Baker, MD: Thank you all very much for your kind attention to this topic. Until there is a cure or a prevention, CARE is what is needed. This is our mission at Copper Ridge and The Copper Ridge Institute. Please visit our Web site at www.crinstitute.org if you would like to ask additional questions or seek the answer for a question you have asked this hour, but for which we do not have time on this Forum.
Alva S. Baker, MD
Executive Director
The Copper Ridge Institute
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