Dementia Care Plans in Practice (Interview 1)

This interview was conducted with a Supervising Resident Care Manager and Registered Nurse for people with dementia at a prominent Dementia Care Home.

Please describe your experience working with care plans:

We don’t do specific dementia care plans. Everyone here is demented, including the staff (no, just kidding.) We do a lot of teaching and individual care notes. We do individualized care notes for everyone. I don’t have a set book for persons with dementia only. We work with each person individually, maybe they won’t shower and we have to work with that. We have a whole program here to train people. We have a nurse consultant. We make the care notes up ourselves.

How long have you been doing this type of work?

Since 1980. I worked part-time as a nurse here for many years and since 2001 have been the dementia care nurse manager.

What training/education did you have to prepare you for the work you’re doing?

I went to nursing school and I have a bachelor of science.

What is your favorite part about working with people living with dementia?

Just having fun with everybody and enjoying the day.

What is the most challenging part about working with people living with dementia?

What we find challenging is trying to get people with dementia to do the things that other people want them to do. To gain their cooperation we try to work with the resident’s family caregivers to work with this person. This is the message that we try to teach - To truly enjoy being together. If someone is not happy with what your doing… They can’t think, they have dementia; YOU have to stop and think about what’s a creative way for the day to go smoothly.

Almost like children becoming more independent. They want to do things their way, but you the mother are trying to get them to do the things your way. Those are the types of power struggles and issues a lot of people with dementia have when they are still at home with their families. A lot of people don’t realize the other person isn’t thinking… The caregiver might get frustrated and start yelling so that really is the most challenging thing. Dealing with everybody’s anger and frustration when people just need to relax and figure out that they need to manage daily activities at the level where the patient is at. To realize there is a problem, recognize it and let go of some of the lifestyle habits that worked in the past and try to be where the person is now. To be with them where they are in a friendly and fun way. A lot of people don’t realize that somebody has it and they will just be screaming about why they are the way that they are. They need to acknowledge that the person now has an illness.

So how do you deal with helping the family to accept the person’s limitations?

Now when we get to meet the family, they already have the diagnosis. So now, anything that we want people to do, sometimes I have to say to a family member, we’re not going to give your husband a shower, he doesn’t want one. I have one family member who’s a nurse and she takes her husband home and showers him at home.

Other people we just say to the family, we’ll your relative doesn’t want to shower and we’re just going to wash her in the bed. Is that ok with you? We’re going to give them a “bed bath”. There are ways to take care of people who are really not getting that dirty. They’re not playing in the mud. When they get soiled, there are shampoos that we can apply and then not worry about rinsing them off. Creative ways to give good care to people without screaming and anger ruining everybody’s blood pressure.

Please describe how care plans are developed. Who has input into the process? Who can suggest changes?

Everybody in this building has individualized care notes.

We try to make the care plan in the voice of the person. For example I will write “I like my medicine with my lunch” “Please bring my pills at noon” “I like to take a walk everyday, please take me out”. Writing them in the voice of the person. “Please be gentle when you move my leg, I’ve had back pain for many years”. This is how we write them. We take a narrative approach using what you know about the person to create a plan of care that makes sense. “I need two people to help me transfer out of my wheelchair, I don’t walk anymore”. It’s the same thing with behavior.

So how do you develop the care notes?

Everybody who comes into the building, for every admission, the care manager writes the care notes and then after you gather a lot of information over the next two weeks we do paperwork and then make the care notes as individual as possible.

Who is responsible for communicating the care notes?

I do it. The culinary people do it. The activities department does it. But the initial care notes are always created by the nurse and then as time goes by the whole interdisciplinary team works on it; reviewing it at least every three months.

Today, we’ve gone electronic. We have touch screens so the aids who work with the residents. When they turn on the touchscreen to the person’s name, the care notes pop up. So they communicate verbally and through written material changes and things to do for people.

What do the words “person-centered care” mean to you?

Person Centered Care in Dementia Care is actually known as “The best friends approach”. i.e. If your resident is alert and oriented, you might say, “Hi Mrs. Jones, I’m here to give you a shower… Is that ok with you? Do you like your showers in the morning or at night? That’s when you can get information from people who can communicate and speak. But if your client cannot do that because their dementia is progressing, you might sit down and talk with them a little bit.

This is what we recommend: “Hi I’m _______, I’ll be your nurse tonight… I’d like to help you wash-up before I get you comfortable to go to bed. What would be a good time? 7 or 8 O’clock?” This depends upon the person’s ability. So that’s what we call the best friends approach. We talk to them more than the average person who can think and speak in a gentle way so that they will want to accept the care that we are offering. To get their permission.

If a patient starts yelling, our staff is instructed to stop immediately. Trying to keep the anger and frustration low. That’s the hard part. People cannot think, they cannot speak, and that is a huge communication problem. To work with their permission at their level of comfort. Make it fun; enjoy the day, that’s what we teach. That’s our message.

How do you ensure that the care plan is followed on a daily basis?

I can’t really ensure it. If something happens like somebody falls, I have to review it to make sure everybody knows. We are honest recorders, so when there is a problem, or if I see it, I call it to their attention whether it’s right or wrong. I also talk to staff about what things happened. Basically we have nurses, medics, all kinds of people walking around here, we are not in some individual’s home. There are a lot of people working to make sure the care notes are being followed. We offer families a copy of the care notes if they want it. The plan of care is unique to each person. In the old days, we used to use little index cards to write down details about a person. But so many of us are here for so long together, and the care is so consistent, that we just tell one another about changes.

Like the other day I found out someone liked tea with milk in it. So I added that to their care notes. Again, I’m not sure that everyone is checking the touch screen to review these details, but I advise them to do it. Especially then if something happens.

Can you tell me about some of the fun activities that go on there?

Well, we have so many people at various levels of functional and intellectual ability. If a person is just in their room, they will have one-on-one visitors and TV. Most people at in the assisted living home go out. They have outdoor activities for everybody there. In the memory care community they have extra activities three times a day. So we make sure that everybody is enjoying their day with music and movement, garden club, an accordion player who comes. We have a structured program.

Are care plans at work in your facility? Do you find them effective? If not, what alternatives do you prefer? Please share.

Books: Making Rounds with Oscar by David Dosa, M.D.

In Making Rounds with Oscar, geriatrician Dr. David Dosa focuses on the nuances of Alzheimer’s disease and dementia. Of Dr. Dosa's patient stories, I found most intriguing the story of a woman with dementia named Ruth Rubenstein and her doting husband, Frank Rubenstein. I have focused on the details of their relationship as chronicled by Dr. Dosa, as it clearly illustrates how dementia affects relationships from diagnosis through decline.

Diagnosis
“I had to look into the eyes of the eighty-year-old woman I had just examined and ruin her life.” Dr. Dosa is examining Mrs. Rubenstein to determine if she has dementia. Couples like Ruth Rubenstein and her husband Frank have a symbiotic relationship whereby one can deflect the questions to the other. So when asked about her favorite restaurant, Ruth does just this – she has her husband answer the question. Dr. Dosa is not deterred by this attempt at covering up her memory loss, and moves on to asking her next to draw a clock from memory. Ruth does this after some coaxing. However, when asked to place the hands at 2:45, she puts the little hand at the two and the minute hand half way between the 4 and the 5.

Next Dr. Dosa asks her how many four legged animals she can list in one minute. Ruth lists only 6 and cat was listed twice. When asked to spell the word ‘world,’ Ruth is able to do so quickly and accurately but she cannot spell it backwards, and gets only two of the letters in place when she tries.

Privately, Dr. Dosa asks her husband more specific questions including if she has done anything dangerous in her everyday living, like leaving the bath running, leaving the stove on, having car accidents or fender benders, or if any other changes in her behavior have occurred. This particular section reminded me of a good friend whose mother had consistently been hitting the curbs and sometimes parked cars at her assisted living facility. My friend had the hardest time convincing her mother to give up driving. Independence is hard to part with, but the dangerous facts spoke for themselves. My friend finally scheduled a meeting with her mother’s doctor, so together she and the doctor could address her health issues in relation to her ability to drive.

Aging and Memory
During Dr. Dosa’s examination of Ruth she tries to insists her memory loss is simply because she is old, but memory does not decline due to simple aging. Here, Dr. Dosa touches on the fact that “age really has nothing to do with memory, and problems with memory are never normal aging.” In fact, many problems like arthritis, high blood pressure, high cholesterol, adult-onset diabetes, and some cancers are contributed with aging, simply because they usually occur in people’s senior or elder years. Interestingly, these are not strict aging related health issues, but rather the effects of years of build-up in the body, allowing the problems to surface in later life. For instance, if one has smoked for 50 years of their life, it makes sense that the damage would in time catch up producing perhaps emphysema or lung cancer in one’s 60’s or 70’s. In fact, my grandmother who began smoking at age 16 did not get emphysema until she was in her early to mid 70’s.

Decline Begins
Dr. Dosa chronicles the decline of Ruth’s mental health via dementia. First Ruth’s memory impairs her social graces and embarrassed by her memory loss, she withdraws from her friends. The withdrawal causes a depression, which is then treated by medication. Next Ruth becomes unable to complete household chores, meals are frequently burnt, simple recipes become too difficult to manage, and her husband Frank must resort to hiring a maid and ordering meals out.

Romance Flourishes
What is interesting is that despite this decline, the Rubenstein’s relationship remains loving and dementia even spices up their love life. Dr. Dosa said, “One day…Frank pulled me aside…like a young teen sheepishly buying condoms for the first time, he asked me if I had any samples for something that might help his impotence." Frank was having trouble meeting his wife’s sexual demands, which Dr. Dosa explains is not unusual for married couples when one has dementia.

Caregiving Becomes Too Difficult
However, as Ruth’s mental decline gets worse, it becomes apparent to Dr. Dosa that Frank can no longer care for her. Frank appears unwashed, disheveled and exhausted. Although Frank takes offense at Dr. Dosa’s suggestion that he put his wife in a skilled nursing facility, he takes the suggestion to heart and hires an in-home caregiver.

Health Declines
Not long after, Ruth contracts pneumonia and is hospitalized. Her memory impairment makes the hospital stay difficult. She wanders about in the middle of the night, gets “tangled in her IV tubing” and falls “awkwardly to the floor.” The fall leaves her with a broken hip requiring surgery. The surgery leaves Ruth with more health issues. She “suffered a pulmonary embolus and became less stable.” When her breathing becomes difficult, they intubate her. Her health does eventually improve but it leaves her too weak to walk and her husband Frank must consent to place her in the skilled nursing facility.

Appetite Declines
In the skilled nursing facility, Ruth stops eating and loses 10 pounds. Her husband insists that she is seen by a gastroenterologist, and refuses to consider hospice. She again contracts pneumonia and returns to the hospital. During this stay she is given strong medications to calm her. Eventually a one-to-one aide is then assigned to keep her from getting up from the bed and falling during the night.

She returns from the hospital, but is too confused to eat and refuses to do so. Intravenous fluids are required to sustain her. She experiences a confused delirium and agitation from hospitalization and refuses to eat. Her husband Frank insists that she must eat, and requests a feeding tube. However, Dr. Dosa kindly reminds him “When your wife was still able to speak her mind she told me she didn’t want a feeding tube to help her with her nutrition. Shouldn’t we honor her wishes?” Frank agrees with Dr. Dosa to honor his wife’s wishes, but begins to cry saying, “Doctor, I’m not ready for her to go.”.

Misconceptions About Feeding Tubes
Here, Dr. Dosa explains the misconceptions with feeding tubes and how they are the point of contention with most families. Most people believe that the feeding tubes prolong life, but Dr. Dosa points out that there is “no place for feeding tubes in terminal dementia. Objectively they have never been shown to increase a person’s length of life or reduce the number of episodes of pneumonia. Feeding tubes are not without their side effects.” Although people believe that not feeding a patient is “cruel and unusual punishment”, Dr. Dosa points out that “loss of weight at the end of life is a natural by product of the body shutting down as it prepares itself for death. People at this stage do not perceive hunger or thirst the way someone who is healthy” does.

Health, Love & Appetite Appear to Return
Some days later, Ruth’s delirium improves and she starts eating again. She and Frank are seen walking down the hallway holding hands. When their anniversary date comes up, Frank asks for privacy so he can be alone with Ruth. Dr. Dosa notes that “requests for privacy between patients and spouses are not uncommon…they’re a married couple. Just because she lives here doesn’t mean that they don’t have needs.” Interestingly, what Dr. Dosa finds out from the head nurse is that another male patient has been spending a great deal of time in Ruth’s room and that Ruth likes his attention.

Spouse Forgotten
Within a few minutes of husband Frank’s arrival, Ruth screams and rushes out of her room. “The look on her face was one of pure terror and she ran past us without stopping.” Her husband Frank calls Dr. Dosa into the room and explains their relationship and what just occurred.

Frank and Ruth had met at a concentration camp in 1943. They spent nine months together until they were sent away to different camps. Before the separation they agreed that if they survived, they would look for each other to meet at a church courtyard in Frank’s hometown. That date they met up was 63 years ago that day; this was the anniversary Frank had come to celebrate, but instead of a celebration he was met with a shock. “’For the first time since that day, Ruth does not know who I am.’” When he bent to kiss her forehead, he said “’in her eyes all I could see was terror…I was a stranger to her. She just started screaming…I put my hand up to comfort her and she slapped me in the face. Then she got up and ran out of the room.”

Existential Death
Frank then said, “Doctor, in my mind my wife died today…please just make whatever is left of her [life] comfortable and don’t let her suffer anymore.”

Somatic Death
Frank never returned to the nursing facility after this day, and within a few weeks, he died of a heart attack. Ruth outlived him by just a couple of months, and without any children, “her lawyer was the closest thing she had to next of kin.”

Although Dr. Dosa’s chronicle of the Rubenstein’s relationship is not met with a happy ending, it is an honest portrayal of how dementia takes its toll on patients and their families.

Dosa, D. (2010) Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat. New York: Hyperion

Love After Dementia

In “Voices of Alzheimer’s” and the Caregiving.com article “Do We Need a POA for Love?” both cover the idea of love after dementia and the ethics of relationships outside of marriage when one spouse has dementia.

The article says “More and more family caregivers are sharing their stories of dating and falling in love with someone other than their spouse.” I found similar sentiments expressed in the book “Voices of Alzheimers.”

“Some of my wife’s friends were upset when I started seeing another woman after Julia went to the nursing home, but I was so damn lonely. I had missed going to concerts and parties for several years. I needed the social life, but it never goes very far. These new friendships don’t hold a candle to the wonderful relationship Julia and I had developed over so many years.” (Husband, p.66)

“There were many problems with my husband’s illness, but one of the biggest was one I couldn’t talk about – he lost interest in sex. I ended up having an affair that ruined several friendships and made me even lonelier. I am thankful I was not more self-destructive during this period.” (Wife, p.66)

“If I just had somebody of my own age group to talk to …I mean, I don’t think that you are violating any of your vows, having somebody you can talk to. I wouldn’t mind having another female, quite honestly, to talk to. Go out and have a beer together.” (Brad, Husband, p.65)

The article “Do We Need a POA for Love?” shares a link to a video about CBS News Correspondent Barry Petersen and his wife Jan who has advanced stages of Alzheimer’s disease. He has since added a new love to his life, Mary Nell, and they together visit and befriend Jan in her residential facility. Mary Nell’s quote is interesting when she says, “The reality is I am a widow. The reality is that he is married to a woman who doesn’t remember him. And so we exist in our own universe of this very peculiar new American family.”

I thought of these dementia caregivers/spouses who are essentially pre-widowed. They have lost their spouses in mind due to dementia, though they remain living in body. They seem to be caught in this middle ground where life is in a holding pattern. They can’t move on and yet they can’t stay the same.

One person in the book says, “People around me are also now unsure of their role; when you have a disease you are supposed to either get better (then they can all cheer) or get progressively worse and die (and they can properly give you care and mourn). Everyone is poised for some type of action, and there is nothing to do for them; they are unsure of how to support this leaky boat which will eventually sink but for the moment is caught on a sandbar.” (JanMina, patient, p.47)

I don’t think it’s fair to impose preconceived ideas of relationships/marriage on caregiver spouses going through a slow death of a dementia stricken spouse. Their needs for love and companionship are important and vital to their health. These are individual ethical decisions that each spouse must make in their own situation. However, I felt that the author of the article brings up a very interesting point when it comes to the children of these marriages. She questions the idea of designating “advanced directives” if you will, to address the wishes of the spouse in a way that would put the family at ease.

“If the daughter knew that her mother would be okay with her father dating, then would this knowledge comfort her today? And, if the mother had expressed different wishes, well, then, would the husband have chosen a different course of action? Along those same lines: If the daughter knew her mother did not want her father to date and then her father did, would this have given the daughter the courage to speak up and discuss her concerns with her father?”

I found these ideas and ethical topics to be very thought provoking, difficult to weigh in on as they are so individual and impossible to pass judgment on as an outsider. All in all, the issues are important and worth considering.

Ref:

1. http://www.caregiving.com/2011/07/do-we-need-a-poa-for-love/
2. http://www.cbsnews.com/stories/2010/06/20/sunday/main6600364.shtml
3. Peterson, B. (2004) Voices of Alzheimer's: Courage, Humor, Hope and Love in the Face of Dementia.