I am currently in my second year of college doing a BTEC in Health and Social Care. As part of my current assignment I am creating a care pathway for an individual with Alzheimer's and need a primary source, in which I would be very grateful if you could answer these two questions.
How effectively did you find that the practitioners and agencies worked together in order to provide the best care?
How effective were the care strategies that were put in place, for example aids for living, travel to and from appointments, medication, alternative therapies, support, scans and tests?
Here's an idea: Instead of writing yet another paper of the millions being already written that do nothing, why don't you encourage your teacher to get the students to volunteer at ground level in dementia care and actually see for themselves what is happening.
Become a "feeder" at a facility, assist the activities person, get a part time job as an aide, adopt a resident with no family. See how hard it is to transport dementia patients, see how hard it is to figure out what is going on when the behavior suddenly changes, try shaving a male patient, try talking to a FT patient, clean fingernails, brush teeth.
Here's a great subject: There is a law that patients cannot be restrained in ALF or nursing homes. HOWEVER, dementia patients forget that they cannot walk and so they are constantly falling out of their wheelchairs or forgetting their walkers. Consequently you will always see patients with broken bones and hideous bruising from terrible falls. Some die from intracranial bleeding. That law was passed by academic do-gooder people who had NO experience working with dementia patients because if they had, they would know that restraints can be a life saving thing if used correctly. They threw the baby out with the bath water and are responsible for countless deaths and injuries. But of course, they are "educated" so they "know" without having been at ground level in dementia care.
We don't need more academic outlines for care pathways by people who don't even know what they are talking about. I do know what I am talking about because I was there with my husband for six years. And I do understand academics, because I have a Ph.D from back in the time when it was a six year on site program in rigorous subjects.
You hit a hot spot, honey. Run with it or run away. But KNOW your subject.
Marsha, you go girl! When I read what you wrote I said to myself "she's going to make it."
Amber, you didn't do anything wrong, but, you really are being offered an insight into the 'real' world of what this is about. There are no comparatives to "best" care because no such thing is formalized to the point that the real world has a best case to compare to. For the second question few anywhere have an experience where all the considerations you mention or even some of them are part of a formalized program.
You got good advice from a Ph.D above who in part pointed out that the academic and abstract manner in which you approached this calls into question whether you understand much about your subject. This entire experience is raw and drenched in pain and on the fly where each caregiver battles to get decent care for their spouse - never mind the fantasy that process is so formalized and communicated that it can be assessed as best.
You're young and you really didn't do anything wrong, but I do agree with marche above that the difference between your concept of reality and how this field actually is, is a very large difference and understanding that better now will help you to know what this field is actually like.
There is no best care. Nothing is good enough. Additionally, Alzheimer's is fatal, and so all care is inadequate.
Amber, I certainly second the advice and comments from marche and wolf. and I would also like to suggest some clarification of your term "practitioner" If you're referring to the patient's primary care physician, or even neurologist, they are for the most part clueless as to the gritty day to day care needs and agencies available for rendering such care. In actual practice the real "practitioners" are the primary caregivers, which usually amounts to family, and it is up to them to see to the day to day needs if still at home, or to advocate strongly for them if placed in an institution of any sort. The role of the family caregiver is under appreciated and under recognized as far as availability of support is concerned.
Hi Amber, I would be willing to be a primary source as long as you get permission from this site's moderator. I believe the rule is that anyone using the site to conduct research must first get permission from the moderator, Joan Gershman. Joan's email address is joan@the alzheimerspouse.com. (I don't think either the rule or the email address is written down anywhere obvious so there is no reason you should have known this.)
Another thing I would suggest is to specify which country you are talking about. This site has members from several countries, including Australia, Switzerland, and Fiji, but most of us live in either the US or Canada. If I understand the term "care pathways" correctly, those pathways would be very different depending on the country your primary source lives in.
Good luck. Hope to see you back here after you've talked to Joan.
I do NOT agree with marche, wolf, and elizabeth. My opinion is based on my experience of being both a student (for too many years) and a teacher of both undergraduate and graduate university students. (1) This student is an undergraduate (a second year student). Her assignment is to set up a care pathway for a person with Alzheimer's. Undergraduates do not ordinarily conduct studies that will add to the academic literature on care pathways (if there is such a thing). Nor do they get to make up their own assignments or tell the teacher to change the syllabus to require volunteering instead what the teacher assigned. (2) The academic and abstract manner in which the student approached this does not reflect a lack of understanding of the subject. It just shows that she is following the framework set out by the teacher. The teacher is requiring her to get information from a primary source, which in this case means someone who actually has experienced the process and can tell her about it (us). Information from a primary source is considered better than information from a secondary source (an article or book that contains someone's else's account of what we might have said about it). (3) We do not know anything about the curriculum in this program, although this particular assignment seems to involve working with an Alzheimer's patient. For all we know, other courses may be practicums, internships, or clinical courses that place students in direct care. (4) Finally, we do not know anything about the life experience of this particular student. Therefore, we have no basis for saying she does not even know what she is talking about or she has no concept of reality, etc.
This thread shows the wisdom of Joan's rule that people who come on this site to study need to check in with her first. (I have no clue where on this site I read that rule but I did.) That way, she can check their bona fides and if she thinks appropriate, introduce them to us and invite us to participate.
Yes, I see what you mean, Myrtle. I probably answered too quickly without thinking it through, which shows, I guess, that I am still somewhat damaged by the Alzheimers experience. Alzheimers "care" , or more accurately, the lack of it, is clearly still a hot button for me...and for others. If Joan gives the OK for us to participate with Amber's assignment, I will give her answers that will probably curl her hair and cause her to change her major. lol (Not really funny...a little gallows humor there.)
Have I mentioned a time or two how much I hate Al Z. Heimer?
There are several things that I have been considering that color my above response:
First, we had my husband's interment the day after Thanksgiving. It was like going through a mini funeral all over again and the pain and agony of all of those years came rushing back. It was visceral,emotional, and very painful. Perhaps that is why I was a bit short with Amber. As a caregiver, the faster I ran the worse things got. His care was only as good as the aide or nurse who was on duty, and all of the care plans in the world did not make one iota of difference. It always, always came down to the person giving the care at that moment in time.
Second, my husband and I both worked in the hospital as aide and orderly during our undergraduate years. Four of our relatives were graduate nurses whose training was in the hospital. My kids who are physicians say that the older hospital trained RNs are better than the BSNs (generally). They have seen emergencies, they know procedures like the back of their hands, they can spot a problem walking past the room - and they know exactly what to do and what to use because of in-hospital training that included procedure training to prevent mistakes. Sadly, hospitals are doing away with nurses with RNs and replacing them with BSNs. The point being, there is no better learning than doing.
We can mandate care plans all we want, but that doesn't mean that they will be, or even can be followed. What we need are better trained and paid care-givers (aides, nurses) and of what I have seen of the system, that just isn't going to happen. So much time is spent paper pushing that patient care suffers. Terribly. Ask any doctor. They WANT to spend more time with the patients, but they are mandated to only spend 10 minutes and spend almost all of that time filling out paperwork.
And while we are talking about doctors, please remember that they are just people. Those of them who "get" the caregiver burnout or the dementia patient have probably experienced it in their personal lives. Medical school and training teaches them to diagnose, but unless they have family experience with dementia, they have no idea what dementia world is like. Again, it is something that has to be experienced. My children, as well as I, had a huge terrifying wake-up call when we placed my husband. And even if your physician understands the social mess that dementia has made of your life, what is he to do in ten minutes? Sign papers for respite. Give you antidepressants. But the enormity of the train wreck that is your life is too big and messy to be coded or treated. Believe me, it is painful for him to not be able to do more but what would you have him do - his hands are tied by the procedure codes already in effect.
Because most of the care of dementia patients falls on the family, society pretty much thinks everything is hunky dory. If these patients were disrupting society more, more might be done. But, hey, the fam is taking care of things so this is win-win for the rest of everyone who don't really want to pay for anything else. It is a deplorable situation. And it is what is happening to everyone with a loved one with dementia.
I don't have answers other than, if you want to know something, roll up your sleeves, get your hands dirty and do it. Who among us understood incontinence until we cleaned up an adult poopy mess in an uncooperative individual, found urine in the closet, or wanted to scream "Not Again!" All things that we swore in the beginning were deal changers for us. And all sad, disgusting behavior from someone we dearly loved and shared a life with.
There is no teacher like experience. Semester finals are two weeks away. I hope Amber's paper wasn't something she was supposed to be working on all semester. Why did I think of this? Because as a caregiver, you always have to be prepared for the next stage and even then it will blind-side you.
I agree that the old, three-year, hospital-trained RNs could handle the floor straight from graduation, and that two-year Associate degree RNs and products of a BSN program (BSNs are RNs, by the way) do not get adequate floor experience in school. It is crucial these days, if you're going through an Associates or a Bachelors program, to also work as a nursing tech. or something like that, to get the hands-on experience you need. There has been a lot of pure nonsense over the years in nursing education, in my opinion. Of course you need a broad theory base in pie-in-the-sky subjects, I guess, but you also need to be able to do a dressing, drop an NG tube, (put it in the freezer, it goes down better), catheterize a patient, know how to do med. computations just on the off chance that everything won't be perfectly packaged by the pharmacy, understand the ramifications of the lab results, deliver a baby, and be comforting to the dying patient and their family whether you are sobbing inside or not. Maintain sterile technique, observe universal precautions, establish a rapport and be therapeutic with people who may be as different from you as chalk and cheese and are weirder than Martian aliens. Maintain at least business courtesy and get along with tired, crabby, over-stressed, sometimes inappropriate other staff members. Drink lukewarm muddy coffee all night without throwing up, and grab a can of Ensure to drink on your med cart because that's the only supper you're getting. Walk into your house and go straight to the washing machine, throwing your uniform in to wash before you touch anything else in your home. Etc., etc. I started with an Associate's Degree in Nursing, but while in school worked the floor as kind of a nurse's aide plus....they let me do a lot and watch a lot because I was a nursing student. Ten years later I got the BSN, which eventually led me out of the hospital and into public health nursing, and after that I picked up a Master's in Public Administration. I agree that fancy care plans in the chart or in a Kardex are great, but the reality is that nobody is going to give you enough staff to do all that stuff. Nursing is a down and dirty job, scary as all get out, exhausting and frustrating. It would be nice to have enough staff to do more than just "keep them breathing" for the extent of your shift. And the only thing that matters...the Only Thing...is the love and care that you give your patients. That is what will make you a good worker who can get the tasks done, or at least prioritize and get the crucial stuff done. There is an X factor to health care, and it is...well...Care...for want of a better word. Hard to define, but anyone on these boards knows it when they see it. It's about care, and love, and just doing everything you can do to help that patient...to alleviate the fear, the pain, the loss of dignity, the loneliness...whatever. If there's five seconds remaining, maybe you can be kind and supportive to the family, too. And so many health care personnel just don't get it. Some do, but many don't. Too much irrelevant theory, too much paperwork or too much monkeying around with PDAs and computer screens, too much talking above the patient's head and not focusing on him; not enough basic bedside care. So many of the basic tasks are considered "aides' work". And the RN is at a desk writing or fielding phone calls, while the aide with six weeks of training in how to make a bed is spending the most time with the patient. Grrrrrrrrr. Don't even get me started. OK, end of rant. I should probably delete this, but I'll be persnickety and leave it.
Don't delete it, elizabeth. Please don't. It should be published. That right there is the best job description I've ever read of a nurse and I bet the words flew out of your head.
It's all about CARE and LOVE.
And, we sure missed you while you were on your "sabbatical."
I am the owner of this website, and literally have just gotten off of an airplane after two weeks away on a Thanksgiving holiday. Thus, I have not had a chance to read this thread carefully. I will do so in a day or two after I get settled.
Ordinarily, I do not allow anyone to post questions about surveys, studies, and papers without getting permission from me first. However, as usual, my members have offered thorough, thoughtful, expert opinions on this thread, so I am allowing it to continue.
I will be sending you a private email, but as I said, it's going to take me a few days to get organized and settled.
More musing and reflection on this topic: The reason this website has been so widely read is that it contains a lodestone of practical advice from caregivers. Most everything I needed to know about caregiving (from 101 through long years of increasingly challenging topics) I learned here from folks from all over the world who have been doing the down and dirty (and sad and heartbreaking) care of their LOs.
Although I read scholarly articles from time to time, I do not remember any moments of enlightenment where I said to myself, "What a great solution for that problem." I did say that over and over again when searching the message boards for a particular issue occurring at that moment in my life of caregiving. The people who knew how to care for dementia spouses were the people who were doing it. And I still firmly believe that one cannot know about the topic without being in the middle of the firestorm.
I had no intention of offending anyone, or causing folks to take sides. Rather, I wanted Amber to realize that the problem of dementia care is life-sucking and killing the caregivers and I wanted her to realize that she might not understand that in writing a paper for a class. Yes, writing papers is a part of the educational process. I get that. But I wanted her to "get" what caregiving actually involves and that what we and our spouses need is more HELP, not satisfaction studies. Perhaps that was asking too much.
Second, third, and fourth guessing ourselves is a by product generated by the seriously bad things we went through.
Amber Lad shouldn't do it. Myrtle shouldn't do it. I'm not doing it. And you don't have to either.
One of the hardest things is to learn how to believe in ourselves again and if these interchanges caused anyone to examine their own ideas then that's a good thing. Ideas that stand up to scrutiny are stronger ideas.
Wolf, One this this exchange did was to make me realize that, even though I have not taught for a long time, I still have a lot of a teacher's desire to encourage students to learn.
Joan, I don't know if Amber responded to your email but I would not be surprised if she was scared off. I think that would have been less likely if she had seen your rule about contacting you before doing surveys. That way, you could have introduced her to us and the process would have been more orderly. However, when I looked for this rule in the "Message Board Guidelines" sticky, I did not see it, although there is a rule about solicitation. (Maybe I read the research rule in one of your posts.) I think the rules for posting would be easier to locate if they were contained in just one place, instead of there being so many stickies with redundant information, e.g., "Message Board Guidelines," "These Message Boards Are for Spouses Only," "Joan's Word on Posting and Not Posting," "Staying on Topic and Off Topic Subjects." Could all these stickies perhaps be combined into the "Message Board Guidelines" sticky? If you ever decide to do that, I would be happy to help. (Since I tend to get into trouble, I am well-qualified to work on rules.)
"The teacher is requiring her to get information from a primary source, which in this case means someone who actually has experienced the process and can tell her about it (us)."
Actually, I wondered about this. The title of the thread is "How effective was your care?" which suggests a basic misconception in the assignment. The question seems addressed to Alzheimer's patients, with the assumption that they can evaluate their own care, retrospectively. I could see this question being posed to people who have recovered from other kinds of medical conditions, but of course here there's no recovery, no looking back.