Interview with Susan Makhamreh

Susan Makhamreh is nursing home administrator and owner. She has been working in nursing homes almost her entire career, and she has several residents that deal with all different stages of Alzheimer's disease.

Why did you choose to work in the healthcare field?

I originally attended nursing school after high school, but didn't believe it was the right field for me. Then, I went into business and accounting, but again 10 years later I fell back into health care as an opportunity for a family business. I found out that with age comes maturity and patience and that prepared me to appreciate the field that I am in where I know every day I make a difference in my residents lives.

How often to you encounter a patient with Alzheimer’s disease?

I work in a nursing home with an average of 100 residents; of that about 70 percent have dementia. Alzheimer’s disease accounts for about half of all the dementia diagnosed residents we care for. I personally oversee their care on a daily basis.

Can you think of any interesting stories involving a patient?

Everyday there are stories that leave an impression on me. Many in which I am able to see a glimpse of my residents acting normal and lucid. One recent story involves a 89 year old female living with moderate stages of Alzheimer’s disease. She is not ambulatory but she requires total assist with all her needs. She has only been with us for about a month now and we have not heard any verbal responses from her. She is very quiet, and appears depressed. She was in the dining room in her Geri chair waiting to be fed, and I walked by her (as I always do around lunch time) and said “Good afternoon.” Then, to my pleasant surprise she replied in a very sweet, quiet voice, “Good afternoon will you give me a cup of milk.” I was amazed to hear her voice, and happy to hear that she was in better spirits that day.

Another of my favorite stories is about a resident that was a nun. She stayed with us for quite some time and she also had Alzheimer’s disease. Her language was often random, loud, and vulgar. One afternoon while her sister was visiting her, she was using this offensive language (which was characteristic of her by now) and her sister was mortified by it. She said, “You cannot be saying things like that, surely you will go to hell for being a nun and using the Lord’s name in vain.” The little old woman smiled at her and simply said, “It’s okay, God knows who I am.” We were all taken aback, especially her sister. Then she continued to say, “and anyway, I am taking you with me wherever I go.” We all laughed about how honest and sure she was in her words and her sister stopped making comments about her language.

What misconceptions exist about Alzheimer’s disease?

Many misconceptions exits about Alzheimer's disease. One main one that I have experienced is that some families believe that their loved one is just acting like a child and can control their behaviors; because of the person’s ability to remember and recall long term memories. This of course is not true, because short term and long term memories are totally separate things, and Alzheimer’s patients lose control of their behaviors. Educating families about the diagnosis is very important in order to provide them with the knowledge they need in order to cope with and understand what their loved one is going through.

How would you respond to common Alzheimer’s issues like confusion, sudden bad temper, or attempts to leave the house?

Maintaining a daily routine gives the resident a sense of security and in keeping things simple you are able to minimize confusion. First and for most the care giver must stay calm and patient while listening to the patients needs and redirecting them. You can combat bad temper and aggressive behavior by simply staying calm, not arguing, not asking too many questions, and giving the patient no more than two choices. As the care giver, you have to allow the resident to calm down since most aggressive behavior is abrupt and usually related to the resident’s environment. You must have a gentle touch and be able to know enough about your resident to redirect them by engaging them in conversation or a subject that you know they can relate to. As far as wandering, again, you have to provide a safe environment by using bars on windows or alarms on doors, and redirect them calmly. Usually Alzheimer's patients are not trying to elope they are simply walking aimlessly about, therefore, calmly redirecting them will avoid an aggressive confrontation.

For the patients with Alzheimer’s disease, how aware are they of their condition? Does their awareness come and go?

An Alzheimer's patient’s awareness can vary and come and go. I have cared for several of them and a good majority has had times of awareness, although this time is very short. As their awareness comes and goes, it is has not been in their mind long enough to know if they are aware of their condition or not. For example, we have a 78 year old resident with Alzheimer’s that has to be assisted with feeding and usually refuses to eat most meals. She has to be encouraged one sip at a time, and one day as I was assisting her she stopped, looked at me, and said that she knew how she was supposed to eat and that she can only eat so much. This is a resident that has never been heard completing any one cohesive sentence. Again, her awareness was only for the moment.

Does the emotional state of a patient with Alzheimer's have any effect on the progression of the disease on an individual basis?

Yes, I think the emotional state does effect the progression of the disease. Residents that are more emotionally stable seem to stay at the same level of functioning without a quick worsening in progression. Emotional distressed and depressed patients can cause physical medical complications (by refusing to eat or get out of bed). You have to provide Alzheimer's patients with a calm environment as best as you can. Alzheimer's disease is known for abrupt mood changes and emotional changes, but if you are able to maintain a calm approach with safe environment you will be more successful at maintaining the stability of patients.

Other than memory loss, what part of one’s individuality is most affected by the progression of the disease? Is there a certain point in which ones identity is lost?

As the disease progresses, individuals can experience changes in personality and behaviors. Families usually tell us that this is opposite of who their loved once was. For example, a house wife and mother who was the patient and calm rock of her family, now yells and screams for everything. Of course, this example shows one extreme. Every resident struggling with Alzheimer’s disease has their own personal progression of the disease and its effects on their life. Sometimes keeping an object with them that reminds them of a positive aspect of their life before the disease can help them feel more like they are fully maintaining their identity.

Does Alzheimer's seem to be more prevalent in a certain race, sex, or ethnic background? If so, could there possibly be a genetic link to the transference of the disease through generations?

Alzheimer's seems to be more prevalent in females as far as my own experience with nursing home patients. (But that could be attributed to the higher longevity of women compared to men.) Without more research, we cannot really be sure if there is any real ethnic, genetic, or environmental prevalence or influence on Alzheimer’s disease.

How important is the search for a cure for Alzheimer's disease?

Research being done to find a cure for Alzheimer's disease is crucial. I am optimistic that a cure will be found. We need to devote the necessary funds to back up our researchers. This disease, unlike any other, affects the physical, mental, emotional, and psychosocial aspects of each individual diagnosed. Since it attacks the brain cells, it is the hard to find a cure. Researching the human brain is limited, and available research shows that changes in the brain begin 10 to 20 years before any visible physical signs are detected. All of these things make research challenging, but as the population ages the search for a cure becomes more and more important.

Is there any other personal insight relating to the disease that you would like to add or discuss?

To sum up some thoughts: The number of Alzheimer's disease patients doubles every five years. It affects people between ages 65 to 85. As baby boomers are aging, and since they are the largest aging population, they especially will have to face this disease in the next 10 to 15 years. If we are unable to find a cure, we will have to be ready to provide the care that is needed. Alzheimer's can affect anyone regardless of gender or ethnicity. Every generation seems to be more independent than the proceeding generation. We have to embrace these facts, and educate ourselves to provide the necessary care and resources in order to avoid neglect and misjudgment of the disease.

Interview with Kathy Naufel R.N.

Kathy Naufel is a registered nurse who has worked in several nursing homes/ senior care facilities as the director of nursing and charge nurse. She is very experienced with caring for patients with the diagnosis of Alzheimer's disease.

Why did you choose to work in the healthcare field?

I choose to work in the healthcare field so that I could have a direct impact on society. In my eyes I am doing something that actually impacts people on a very personal level; it is very rewarding work.

How often to you encounter a patient with Alzheimer’s disease?

I encounter patients with Alzheimer's disease, unfortunately, more often than one would want. 70-80% of my patient's have a diagnosis of Alzheimer's of Dementia.

Can you think of any interesting stories involving one of those patients?

There are many interesting stories; one that stands out in my mind is about a patient who is a retired nurse. She is probably in the 6th stage of Alzheimer’s, she is at the point where she still responds to her name but has forgotten the routines of daily living, like brushing teeth, combing hair, using the bathroom etc. She is one that unfortunately still has moments of lucidness every now and then; you can see the shame she feels when she realizes that she is in a nursing home unable to care for herself and unable to explain what is happening to her. Unfortunately in our society our geriatric population feels that shame, they view themselves not as a sick person with a disease but as less of a person who is losing their mind which can be heartbreaking to watch. This particular patient actually lights up at times and often goes up to the medicine cart and wants to take care of other patients on her unit. She calls them her patients and at times she actually will catch things that our staff may miss. One time she was in the dining area and she saw a patient clutching her chest, she yelled out for someone to get help, and said “call 911 Ethel is having a heart attack!”. And she was right. Later when she was asked how did knew to call for help, she simply said "she was cyanotic and clutching her chest". But sadly two seconds later she couldn't remember where her room was, or what is she was suppose to be doing. This is a very cruel disease.

How important is the search for a cure for Alzheimer's disease?

A search for a cure is pivotal for our aging population. Finding a cure can mean so many things for this population: a better quality of life, a healthier long-living body, and (most importantly)the ability to live, age, and die with dignity and the ability to experience as much as possible in life.

What do you think about using grid computing in this search?

I think grid computing may have a great impact on finding diagnostic implications and genetic ties to Alzheimer's, but I don't think that it would have much impact on actual implication of practice for interventions for everyday problems that this disease presents. While Alzheimer’s is a defined disease process, it effects every individual differently and it would be hard to compile information that may fit and categorize people, every patient is a unique individual with very specific habits and needs.

What misconceptions exist about Alzheimer’s disease?

One misconception is that a patient with a below average intelligence level is at a higher risk for developing Alzheimer’s. While research shows that keeping the mind engaged and stimulated may lesson your chances of developing Alzheimer's, there is just as much research that shows that the your genetic disposition has a much bigger impact and can contain triggers for developing the disease. We have had a president that died of Alzheimer’s, in my career I have had patients that worked as doctors, lawyers, accountants, and CEO's; this disease doesn't discriminate.

Another miss-conception is that this very fragile population is crazy. Unfortunately when patients enter the healthcare system many get miss-diagnosed with things other than Alzheimer’s (like psychiatric disorders, explosive behavior disorders, or major depression). All of these may accompany a diagnosis of Alzheimer’s but many in the healthcare field see a psyche diagnosis and do not look beyond it, so these patients end up on psyche medications that may actually advance the disease process. In the end this hurts this population by delaying effective proper treatment and interventions.

Also, some family members have a hard time understanding the disease so when a loved one doesn't remember them or lashes out they take it personally, and do not see it as a disease process like they might if they had a cancer diagnosis.

Is the progression of the disease variable in independent patients? (Meaning can it progress very rapidly in some and slower in others. ) Could there be genetic factors that affect this?

I think the progression of the disease is different in each individual, which could have some genetic influence. There are 7 stages to Alzheimer’s and each individual is unique. I have seen some go from stage 3 to stage 6 in a month’s time (not years). On the same the opposite end of the spectrum, I have seen some stay in stage 4 or 5 for several more years than expected. There may be a genetic factor that affects this.

What are the classifications for the levels of severity of the disease in individuals?

There are 7 stages; the classifications we use are based on the stage and level of functioning. Stages 1-4 fall under level one because most patients can still function in society with help from family and the community. Stages 4-5 require 24 hour supervision because there is a moderate to severe cognitive impairment and the individual needs help usually with all or most of activities involved in daily life. Level 3 is usually stages 6-7 which are severe cognitive end stages of the disease.

These levels help us in identifying the interventions used for a specific group and the appropriate activity level needed for cognitive stimulation.

Most of the medications for Alzheimer’s disease are still being researched, in your experience are there any medications that you feel are the most helpful(or harmful) or does it vary from patient to patient.?

There has been an increase in research for new medicines, but I have not had a more positive or negative experience with one particular medication over another. Usually it is a combination of meds like Aricept and Nemanda. If given early enough, I have seen the disease process actually slowing down. Yet, most patients sadly don't get diagnosed in the first or second stage thereby limiting how much impact pharmaceuticals can deliver.

As the population of older individuals increases, do think that if a cure or ways of prevention of Alzheimer’s disease has not been found, that it will reach epidemic proportions among the elderly?

There is a lot of speculation about this disease in the future; many say that with the baby boomers we will see a large increase of the Alzheimer’s population. I think an epidemic is very possible because we are going to have an increased incidence of aging population period which will mark an increased incidence of Alzheimer’s.

Is there any other personal insight relating to the disease that you would like to add or discuss?

My experience with Alzheimer’s patients has opened my eyes to living my life to the fullest and not taking for granted the gift of our mind. I have seen many families struggle with loved ones and their Alzheimer's diagnosis. I think most of them blame themselves somehow for not noticing earlier or just feel guiltily for having to keep them in a nursing home. I think we need to put more money towards educating the public about early signs of the disease so that we can diagnose patients earlier, and hopefully get them started earlier on medications sooner. That may slow down the progression of the disease which can dramatically improve their quality of life.