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This article uses the evidence on the needs of individuals with early-stage dementia to discuss and exemplify the importance of including the person in planning his or her care. Including individuals with dementia in planning is the best way to meet their changing needs from diagnosis through the course of the disease. This article stresses the importance of individualizing care strategies with input from the person with dementia, especially with consideration of the concept of maintained awareness presented in Bossen, Specht, and McKenzie’s (2009) article in this issue (pp. 8–15).
The first author (J.K.P.S.) and third author (A.L.B.) completed the literature review and synthesis. The first author asked a person living with the symptoms of dementia, Richard Taylor (R.T., the second author), to provide an insider’s perspective to this article. R.T. is an active advocate for himself and others living with the symptoms of dementia. (He has been diagnosed as having dementia, probably of the Alzheimer’s type, and certainly with Alzheimer’s syndrome.) He is a former psychologist and still thinks about thinking (mostly his own now). He has written a book, Alzheimer’s From the Inside Out (2007), and is a speaker sought by those interested in hearing what it is like to live with the symptoms of dementia. He has served on the advisory boards for people living with the symptoms of dementia for both the Alzheimer’s Association and the Alzheimer’s Foundation of America. R.T. and J.K.P.S. agreed to form a partnership in developing an article that used the evidence of what we know to build a plan for his care. His reactions and comments to the literature review are in italics and add the perspective of one person with dementia to this endeavor.
This article attempts to “prove” what we all should already know. People are whole people until the moment of their death. They are only “unaware” when compared with the awareness of the professionals and caregivers standing around talking about them. The real issue to be appreciated is, How can people without dementia appreciate and approximately understand what “awareness” means and is to a person who is living with the disease? How can professionals support or enable the people they serve to live in (to appreciate) today? It is not the lack of awareness of the disease that is the critical issue. It is, in my sometimes humble opinion, the lack of awareness of what today is, of what today means, that is the most useful kind of awareness for a person wrestling with the symptoms of dementia. At least that is my fear.
Awareness in Individuals with Early-Stage Dementia
Previous studies and practices have assumed that individuals with Alzheimer’s disease (AD) had impaired self-awareness beginning with diagnosis; therefore, caregivers were the primary informants for planning and assessing needs. Evidence now supports the existence of awareness in individuals with AD (Clare & Wilson, 2006). Awareness is relevant in the identification of needs. With retained awareness, broader ranges of needs are evident, such as those related to protection of self-esteem, managing responses to the disease, personal control, education, and support. Retained awareness allows individuals with AD the opportunity to share their perspective and to help determine their own quality of life (Burgener, Twigg, & Popovich, 2005, evidence grade: C1; Clare, Marková, Verhey, & Kenny, 2005, evidence grade: A1). Clare and Wilson (2006, evidence grade: C1) found that awareness of individuals with AD persists long into the dementia process with no association between discrepancy scores (measure of awareness) and Mini-Mental State Examination (MMSE) (Folstein, Folstein, & McHugh, 1975) scores over time.
Knowledge regarding retained awareness in individuals with AD influences program design, content, and assessment of outcomes. This includes targeting only caregivers for support programs. The caregiver has traditionally been the identified target for education, support, and intervention trials, on the basis of the long-standing belief that the onset and progression of dementia is accompanied by disintegration of awareness. Although a study by Onor, Trevisiol, Negro, and Aguglia (2006, evidence grade: C1) supports some decline in awareness, awareness can still be objectively assessed. In addition, studies have indicated that caregiver assessments varied from those of the individuals with AD, even regarding awareness of caregiver emotions (Derouesné et al., 1999, evidence grade: C1; Starkstein et al., 1997, evidence grade: C1; Vasterling, Seltzer, & Watrous, 1997, evidence grade: C1). This evidence supports that programs and assessments that rely on caregiver learning and evaluation are limited and may not adequately represent the individuals with AD. Many programs and studies preclude participation of a person with AD because they may not have a reliable informant for the study, a practice that is no longer supported by the evidence (Eloniemi-Sulkeava et al., 2001; Morhardt, Sherrell, & Gross, 2003).
Further support for awareness of individuals with AD comes from research targeting the transition to AD. In a review of studies, Jonker, Geerlings, and Schmand (2000, evidence grade: A1) evaluated the predictive value of memory complaints, indicating self-awareness of memory loss. The reviewers found that subjective memory is predictive of cognitive decline and dementia, particularly in individuals who already have some cognitive decline. Findings indicate the greater the subjective memory, the slower the decline and disease progression. These findings are supported by a more recent study by Jorm, Masaki, Petrovitch, Ross, and White (2005, evidence grade: C1). Higher levels of awareness are also related to better outcomes in cognitive rehabilitation interventions (Clare, Wilson, Carter, Roth, & Hodges, 2004, evidence grade: C1).
Just talk to us! Of course we are aware. Although many of us maintain some degree of denial because of our fears and the myths, misconceptions, and misunderstandings that pass as “common knowledge” in the general population, somewhere, somehow, we know what we know, and what we know is that we are experiencing the symptoms of various forms of cognitive decline. We just don’t want you to know because we fear the consequences of losing control! Sort of, “If we don’t admit it, it doesn’t exist. And if it doesn’t exist, I don’t have to change the way I live my life.”
Individuals in the early stages of cognitive decline still drive, still write checks, still make love, still raise families, and still play bridge. Over time, our skills at successfully completing these activities will deteriorate relative to our skill set. Sometimes we are aware of the changes, sometimes we are not. We need partners (professionals and caregivers) to compensate for our cognitive skill losses and allow and encourage us to use existing skills in ways that are more effective. But always, we are individuals. Always, we are fully formed people. To characterize us as anything less is wrong and dangerous for you and for me.
Need for Education of Health Providers About the Perspectives and Maintained Awareness of Individuals with Dementia
Evidence-based reports have described the perceptions of individuals with AD participating in early-stage-focused support groups (Dyck, 2003, evidence grade: D). Participants shared a feeling that they are being marginalized through their loss of independence, treatment by care providers, and public and media portrayals. Individuals with dementia emphasize the need to belong, to feel important, and to be a part of something bigger (e.g., some collective action or self-advocacy), and the need for support groups. These needs for recognition and participation in care support findings from additional studies by Burgener and Dickerson-Putman, (1999, evidence grade: C1), Clare (2002, evidence grade: C1), and Lawton (1994, evidence grade: D), which identified that individuals with AD need psychosocial support, programs, and supportive contacts to encourage maintenance of self-esteem, as well as caregiver understanding. Clare (2002) and Moniz-Cook, Agar, Gibson, Win, and Wang (1998, evidence grade: B2) also identified key areas in which interventions may support coping strategies and enhance well-being and self-esteem. The identified strategies may help people cope, but they must be relevant and specific to the individual. Health providers who are knowledgeable about retained awareness in AD may be more likely to include the person in planning care, obtain information directly from the person, and develop individualized care plans tailored to the person’s self-identified health-related needs.
Need to be Heard
There is a limited amount of evidence describing self-identified needs of individuals with AD (Cotrell & Schulz, 1993, evidence grade: D; Zarit, Femia, Watson, Rice-Oeschger, & Kakos, 2004, evidence grade: C1). See the article by Bossen et al. (2009) on pages 8–15 in this issue for a more complete discussion of this evidence. These findings support the need for interventions focused on increasing the caregiver’s understanding of the care recipient’s needs to improve the caregiver-person with AD relationship. Increasing caregiver knowledge and understanding of awareness in individuals with AD may translate into the inclusion of the person in decision making and conversations.
Need for Assessment of Individual Losses and Strengths to Build Individualized Plans of Care
The progression of the disease and resulting symptoms are different for each person with AD. There is a need to tailor programs to retained skills and not assume all individuals with dementia are the same over a changing and unpredictable clinical course (Garand, Buckwalter, & Hall, 2000, evidence grade: D; Salmon & Lange, 2001, evidence grade: A1). The MMSE is relatively insensitive to very mild, but significant cognitive decline in highly educated individuals and has floor effects in tracking individuals with severe dementia. The MMSE is a valuable screening tool but is less useful for tracking progression over time. Neuropsychological assessment provides a reliable means of detecting dementia in its earliest stages and of tracking the progression of cognitive decline (Salmon & Lange, 2001, evidence grade: A1). Assessment of everyday behavior is significant for diagnosing and predicting disease progression in AD. Memory, instrumental activities of daily living, mood, and social behavior decline in a linear fashion as the disease progresses. However, this is not true for behavioral symptoms, which may fluctuate over time, and their severity does not systematically increase with disease progression (Bläsi et al., 2005, evidence grade: B1).
There is a need for accurate assessment to focus on the information provided about impaired and spared abilities so that the retained abilities can be capitalized on and the impaired abilities supplemented. This is especially important for communication. Predictions using outcomes from standardized tests can be made about functions that are likely to decline and the interventions that can be implemented to sustain those functions for as long as possible (Tomoeda, 2001, evidence grade: A1). Individualized assessments and plans may also identify coping strategies to enhance well-being and self-esteem of individuals with AD in early stages (Clare, 2002; Richards, Moniz-Cook, Duggan, Carr, & Wang, 2003, evidence grade: D). Poor function often results in the person with AD withdrawing. Withdrawing often results in further decrease in functional abilities that is often attributed to the disease but is actually “excess disability” because the problem of withdrawal is not addressed (Reifler & Larson, 1990, evidence grade: D). Awareness of individuals with AD in early stages has implications for assessment and individualizing care. The need for individualized, person-centered programming may be met only if the perceptions of the person with AD are taken into account and valued.
A-men! Surely the question still shouldn’t still be “if” we should be involved in our own care plans, but how? No one person can be assessed in any humanistic and realistic way by inventorying and adding up what remains of his or her cognitive abilities, subtracting what has been lost, and comparing the result to the person who was. Isn’t it possible for people living with the symptoms of dementia to grow as a person, even as their cognitive abilities are declining? Can’t we become smarter, funnier, kinder, more loving, more open, more caring, and more knowledgeable in areas in which we are interested? Of course we can! Then for heaven’s sakes, stop trying to classify us against a system you do not even measure yourselves against. You are always capable of growth. So are we!
Summary of the Evidence
There is strong support for individuals with AD to be involved in the development of their plans of care. Evidence supports the maintenance of self-awareness in individuals with AD and the ability of individuals with AD in support groups to identify their needs. Individuals with early-stage AD have focused on things most critical to them, including what assistance is needed from both informal and professional caregivers and what can be most beneficial to quality-of-life issues. Plans should include supportive and educational programs self-identified needs. (Plans must also take into account preserved self-awareness and address preservation of self-esteem, maintenance of abilities, and management of behavioral symptoms including depression, and health promotion.) This information provides the guidance needed for the joint planning between individuals with early-stage dementia, their families, and health care providers. Taylor (2007) noted the absence of discussion on this joint planning in most of the AD literature. As he says, it omits the most important person, the person with dementia.
Please, please do not think of people living with the symptoms of dementia as simply and only maintaining our self-awareness. What you mean is maintaining your concept of self-awareness. What you mean is expressing self-awareness as you express your self-awareness. I want to live more than a life of maintaining my self-awareness. I know my self-awareness will change in content and form and in my ability to think and chat about it. But know I will always be self-aware! The challenge for both of us is to better understand this different type, different form of self-awareness. Assuming I am a whole me and figuring out ways to enable me to be a participant in my own care is the necessary, critical, and first step in transforming the words patient-centered care into meaningful human interactions.
The Partnership for Assistance and Support by a Nurse/Health Care Provider
Partnering with me.
First, we need to start before issues become issues. The biggest mistake I and my family made was waiting until we were up against some problem and then we tried to partner to solve it. It doesn’t work; at least for us it didn’t work. There are issues, such as driving, handling money, freedom to be alone, and cooking that are going to inevitably become problems if we don’t proactively address them.
Second, we need to be clear in our own minds and with each other what it is we fear that makes these issues in fact issues. For example, I don’t want to lose my freedom to come and go at will, while they don’t want to worry that I am going to get lost or get an in accident or hurt myself or someone else. I don’t want to have to come to my caregivers every time I want to buy a candy bar, or a plant, or a frog (I raise tree frogs), while they don’t want me wasting money, making poor financial decisions, or losing cash I am carrying around with me.
Third, we need to keep reminding each other and ourselves that our goal is to enable me to continue to function as I want, while maintaining my caregivers’ confidence that I am not at risk. We need to look for win-win solutions. We need to talk in these terms. We need to constantly assure each other we are all in this together, and we all share the same common goals. Easier said than done. I know from personal experience.
R.T. and J.K.P.S. began by discussing the things that were most important to him and came up with this list. This is where the work together should begin. This is a beginning plan for R.T.
1. Maintaining Control
Money, coming and going, relationships, treatment.
Plan how he can maintain control of going where he wants and when he wants when he is unable to drive. Anticipate the loss; don’t wait until it happens.
Driving—Here is an (after my own experience) example of how I think (wish) this partnership could act:
Traditionally, people with dementia dread the day when they will walk into the living room of their own house and see all the family members seated in a circle. No one will make eye contact with them. The oldest will say, “Dad/Mom/person living with the symptoms of dementia—it is time to stop driving. Give us your keys, or we will have the police come over and take them away from you,” or words to this effect. Sometimes they lie to us, telling us the car is broken and will take a long, long time to fix. Sometimes it just disappears and no one seems to know where it is.
So here we sit, at home, our freedom to come and go at will taken away from us primarily because we cannot be trusted to be a “safe driver.” We crossed this bridge when we came to it. “I was in a little fender bender.” “I got lost.” “I forgot where I parked the car and if I parked a car.” There is a precipitating incident that everyone without dementia agrees is a really good reason not to let us drive anymore.
How could this common issue be turned into a win-win situation? How could we all have our needs met? My needs are to get out of my house whenever I want and go wherever I want. Your needs are for me to be safe while driving, not to hurt other people or damage other property while driving. Whose needs are met by this disabling plan? Yours, mine, or ours?
Why don’t we all (include me in the process, don’t take it all on yourselves) now, while I am still driving, call some of our friends and see if we can find five of them who will volunteer to drive me somewhere at a certain hour on Mondays? I probably won’t use this support for a while, but sooner or later I will try it.
The goal is to continue to give me the freedom to come and go (I can still safely do that), without subjecting myself and others to the possibility that my attention may wander, flicker, and I cause an accident.
Make plans to assure R.T.’s ability to continue to be mobile (able to walk safely) and do the things he wants to do. He now walks with a cane because he is falling sometimes. He is more fearful.
- Try yoga, which has been successful for some with dementing illness (Graboys & Zheutlin, 2008). J.K.P.S. identifies the availability of yoga classes in the area and helps R.T. arrange transportation.
- Have R.T. try strengthening and balance exercises. J.K.P.S. makes a referral to a physical therapist who could prescribe the exercises. Assist R.T. in learning the exercises and develop a way to measure improvement.
- Emphasize maintenance of walking ability, not falls prevention—the focus is what R.T. wants and needs.
4. Establishing New Social Connections and Maintaining Old Connections, or “socialceuticals” (a Take-Off on “pharmaceuticals”)
It is important to have new relationships in which R.T. is appreciated for who he is now and to not always lament how he is not like he used to be or look for the previous Richard. In addition, it is important for R.T. to have relationships that are stimulating and encouraging.
- Support efforts to maintain an e-mail correspondence with all interested individuals and the publishing of his newsletter. (R.T. publishes a monthly newsletter, Alzheimer’s From the Inside Out. He compiles e-mails of all of those who have expressed interest or e-mailed him. This is one way he fulfills his purpose of improving the care of individuals with dementia). Refer individuals to R.T. who are interested.
- Communicate ideas of how he might extend his work. Problem solve with him about how he may be assisted in keeping up his correspondence and connections.
- Assign interested nursing students as friendly visitors. (These interventions are specific to R.T. and are from J.K.P.S. as a provider. The plan of care needs to find ways to support the goals of the person with AD.)
5. Mission or Purpose: Recognition, a Means for Continuing
R.T. has passionately pursued his desire to make things better for people with AD. The provider role is to support and encourage this activity. Possible approaches include addressing with him the barriers he faces in continuing the effort, including traveling, making arrangements, and creating a reasonable schedule that permits him to rest and organize his thoughts.
6. Managing Stress and Emotional Responses
Possible approaches include encouraging him to have a counselor, another person, or several people who are not part of his caregiver network with whom he can share his frustrations and concerns.
The above is the beginning framework of a plan. Again, it needs to be discussed with R.T., and decisions must made about how he would like to proceed and which priority areas to pursue. In addition, there is a need to reevaluate: “Is the plan helping?” “Are there other things more pressing to address?” “Have his needs changed?” “Have his ideas of what he wants changed?” This may call for new and modified plans.
I want the design of a plan for yours truly that meets my needs and wants as I think and feel and the needs and wants of my caregivers as they think and feel.
The sample care plan presented in this article is not complete but was developed, in part, to exemplify the process. There are also gaps between what is in the plan and what is identified in the literature. This reflects the dearth of information in the literature about the point of view of individuals with dementia.
R.T. and J.K.P.S. believe that provider-client partnerships are essential to meet the needs of individuals in the early stages of dementia and their families. This is supported by research evidence and the expert, the person with dementia. We challenge each of you to assure that in 16 years there will not be another article advocating partnerships between providers and clients, and instead there will be evidence of the wholesale use of provider-client partnerships in planning care.
The provider-client partnership must also include advocacy for funding to support the assistance described in this care plan for individuals with early-stage dementia. This has been a part of R.T.’s ongoing advocacy efforts.
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