Savvy Caregiver Advanced Course Trainer Manual Ann O’Sullivan, OTR/L, LSW, FAOTA Kate Cole Fallon, MS, LCPC, NCC Ken Hepburn, PhD Linda Samia, RN, PhD, CNL December 2013 The project is sponsored by the Maine Office of Aging and Disability Services (OADS), Department of Health and Human Services, with funding from the US Administration on Community Living
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Savvy Caregiver Advanced Course Trainer Manual
Ann O’Sullivan, OTR/L, LSW, FAOTA Kate Cole Fallon, MS, LCPC, NCC
Ken Hepburn, PhD Linda Samia, RN, PhD, CNL
December 2013
The project is sponsored by the Maine Office of Aging and Disability Services (OADS), Department of Health and Human Services, with funding from the
US Administration on Community Living
Savvy Caregiver Advanced Trainer Manual – December 2013
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Savvy Caregiver Advanced Trainer Manual Table of Contents
Introduction, Fidelity and Core Elements …………………………….…………………………… 1
Maintaining Fidelity to the Program …………………………………………………….. 4 How Does a Savvy 1 Trainer Become a Savvy 2 Trainer? ………….……….….. 6
Handouts / Resources for Each Session ……………………………………………………………. 7 Session One ……………………………………………………………………………………………………… 9 Review of Models from Savvy 1…..……………………………………………………….. 12 Need-Driven Behavior Model ……………………………………………………………… 16 The Environment of Behavior ……………………………………………………………… 21 Savvy Concepts …………………………………………………………………………………… 25 The Problem Solving Process …………………………………………………………….… 26 The Impact of Caregiving on the Caregiver …………………………………………. 32 Try It Out ……………………………………………………………………………………………. 35 Session Two …………………………………………………………………………………………………… 36 How Did It Go? …………………………………………………………………………………… 36 Who’s on My Caregiving Team? ………………………………………………………….. 37 Strengthening the Care Team …………………………………………………………….. 41 Guiding Behavior in Activities of Daily Living ………………………………………. 46 Try It Out ……………………………………………………………………………………………. 49 Session Three ………………………………………………………………………………………………… 52 How Did It Go? …………………………………………………………………………………… 52 Caregiving Challenges ………………………………………………………………………… 54 Resources ………………………………………………………………………………………….. 61 Guiding Behavior in ADLs …………………………………………………………………… 62 Try It Out …………………………………………………………………………………….…….. 67 Session Four ………………………………………………………………………………………………….. 68 How Did It Go? …………………………………………………………………………………… 68 Guiding ADLs ……………………………………………………………………………………… 69 The Care Team …………………………………………………………………………………... 74 Challenges and Self-Care ………………………………………………………………….… 75 Program Re-Cap ……………………………………………………………………………….… 77 Maine Statewide Collaboration and Resources ……………………………………………… 85
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Introduction, Fidelity and Core Elements Welcome to Savvy Caregiver Advanced! As a trainer for the original Savvy Caregiver program, you already know what a powerful impact that curriculum can have on family caregivers of people with dementia. We hope this manual will help guide and inform you as you add the Savvy Caregiver Advanced program (which we will be referring to as “Savvy 2”) to the training that you offer. The Savvy 2 program is an outgrowth of Maine’s success with the Savvy Caregiver (Savvy 1) program. Participants are caregivers who completed the Savvy 1 program at least 5 months previously, where the person with dementia continues to live in the community. Savvy 2 focuses on the challenges that are likely to be faced over time as dementia progresses. Like Savvy 1, Savvy 2 is a psychoeducational program. This means that it provides information and emphasizes skills and caregiver self-efficacy. Sessions incorporate practice and group reinforcement, meaning that people try things out and then get feedback. The course is experiential, and participants apply what they learn in class to their own situations. Classes are highly interactive, requiring active engagement in learning and practice and reinforcement of newly learned information / skills, and include debriefing and coaching as new skills are acquired. This form of training has been shown to be very effective. In fact, findings from Pinquart and Sorensen’s (2006) meta-analysis of caregiver interventions suggest that psychoeducational training had the broadest effect on caregiver outcomes. While both Savvy 1 and 2 can help caregivers of people with dementia, they are just two of the many caregiver resources that are available in the community. Trainers should be prepared to guide caregivers towards others supports and resources that may be helpful. It is also important that participants understand that Savvy 2, like Savvy 1, is not a support group, but is a training program. Caregivers often comment on their post-class evaluations that they want more time to share and discuss their situations with each other. Trainers can help them identify existing support groups to join or encourage them to form their own groups ongoing to meet this need. Virtual support groups are also an option for caregivers who prefer this means of connectivity. Where did the Savvy Caregiver Advanced program come from? When Maine began compiling feedback from caregivers who took Savvy 1, a number of responses indicated that caregivers would like additional training to address future needs, which led us to consider what might be helpful. A number of available interventions address caregiver symptoms of depression, stress and anxiety and are helpful in teaching skills that are adaptable. However, these tended to be focused on a specific point in the progression of care, and there seemed to be a need for responding to the ongoing training needs of caregivers.
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To learn more, the evaluation team added a question about ongoing learning needs and preferences to the five-month follow-up surveys for Savvy 1. Nearly half of the respondents reported that their role had changed due to increased demands, and 78% requested additional caregiver training. Half of those individuals offered input on future content. Maine applied for, and was awarded, a second Administration on Aging (AoA, which is now under the umbrella of the Administration for Community Living, or ACL) grant in 2010, with a major goal being the development and refinement of an advanced Savvy Caregiver course, as well as the creation of replication materials (trainer and participant manuals and train-the-trainer program). How Was the Content Developed? While the initial information on the 5-month surveys confirmed that a need existed, more information was needed to refine the framework and content of the program. The University of Southern Maine (USM) researcher analyzed the feedback on surveys to inform focus groups, which were then held in all 5 AAA regions of the state, with 26 caregivers participating (Samia, 2012). Analysis of the focus group discussions showed that caregivers enjoyed the interactive problem-solving of the group related to preparing for the future, shaping the troubling behavior of the care recipient, reshaping the resource team, and caring for themselves. It supported the need for advanced training as caregivers move through the trajectory of caring for persons with dementia.
Identified themes included the following learning needs:
Knowledge and skills to manage new needs / problems (maintain mastery) o Dealing with more challenging and troubling behaviors o Applying the tools acquired in Savvy 1 to a changing situation o Enhancing skills to assess care recipient unmet needs (the meaning of behavior) and to
fit activities and expectations to the person’s ability as dementia progresses o Strengthening skills to achieve contented involvement as dementia continues o Paying attention to the effect of the caregiver on care recipient behavior
Strategies for late stage physical care and activities of daily living (ADLs) o Coping with increasing dependency o Managing resistance o Shifting from reacting to / correcting behavior to assessing the situation and using
nonverbal communication in order to prevent discomfort and troubling behavior
Tools and ideas for planning for the future and facing tough decisions
Strategies for enhancing communication with others o Examining and reshaping the care team o Navigating the formal resource system
Reinforcement of caregiver self-care o Creating awareness of the future loss of their caregiving self o Needing reinforcement of strategies
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The learning needs identified in surveys and focus groups were then translated to an initial curriculum developed by Dr. Ken Hepburn, who developed the original Savvy Caregiver program. Southern Maine Agency on Aging (SMAA) and USM collaborated with him on creating materials and translating the curriculum to trainer notes. Dr. Hepburn came to Maine, offered a training to potential trainers, and got feedback. This was incorporated into the curriculum and SMAA delivered a pilot series to selected Savvy 1 alumni. The program was refined based on that group’s and trainers’ feedback, and the new version was piloted statewide, and then offered in all regions of the state. The resulting caregiver training structure has much in common with Savvy 1. It is also framed as a clinical training with all the elements of a psychoeducational program. The same eligibility requirements (family caregiver of a person with dementia who lives in the community) apply, with the addition of having completed a Savvy 1 course at least 5 months previously. The Savvy 2 series has four sessions, which are 2 hours each, and 6 – 10 caregivers take the class together. Savvy 2 addresses ADLs, caregiver self-care, future planning, and preparing for the challenges ahead. As with Savvy 1, caregivers are exposed to multiple models and strategies but the expectation is that caregivers will gravitate to the ones that best fit their situation and needs. The basic elements include:
A review of the strategies and models learned in Savvy 1
Introduction of additional models as frameworks for considering function and behavior o These models include
The Problem-Solving Process (Nursing Process Model) (Yura & Walsh, 1983) The Need-Driven Behavior Model (Need-Driven Dementia-Compromised
Behavior Model) (Algase, 1996) The Environment of Behavior model
In each session, the class walks through a different ADL, using the models. The curriculum is written using bathing, having a meal, dressing and toileting, although the trainer can incorporate a different activity if it is more relevant to the group.
Participants consider their caregiving teams, including evaluating who is helpful and who is not, considering who to bring in (formal and informal resources), and problem-solving how to ask for and receive help.
There is a strong focus on identifying and considering future challenges, including health care decision-making and options for end of life care. The types of grief that are often experienced by people assisting someone with dementia are considered, and coping strategies are suggested.
The importance of caregiver self-care, both in the present and in the future, is reinforced.
As with Savvy 1, participants are given suggestions about trying out strategies, and report back to the group for discussion and feedback.
As of August 31, 2013, 140 caregivers in Maine had participated in Savvy 2. Of these, 94% attended 3 or more sessions. Participants were overwhelmingly positive in their evaluation of
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the SCP-2 training, with 94.3% strongly agreeing or agreeing that the training was relevant to their situation, 97.2% strongly agreeing or agreeing that the strategies suggested to them in the program were useful to them, and 97.2% strongly agreeing or agreeing that they would recommend the program to other caregivers. Caregivers complete pre- and post-surveys to measure the effectiveness of the program. The measures and tools are the same as those used in Savvy 1, and include:
Caregiver symptoms of depression: Center for Epidemiologic Studies Depression Scale (CES-D)
Caregiver mood: Bradburn Affect Scale
Caregiver competence (Pearlin, et al)
Personal control beliefs: Mastery (Pearlin, et al)
Personal gain (Pearlin, et al)
Self-efficacy (Steffin et al, Revised Scale for Caregiving Self-Efficacy) Results suggest statistically significant improvement in caregivers’ sense of personal gain derived from their caregiving situation, improved negative mood, enhanced sense of self-efficacy in their ability to respond to disruptive behavior and fewer depressive symptoms. Development of Trainer and Participant Manuals One of the AoA grant goals has been to develop tools to make the program replicable in other areas of the country. To help meet this goal, Kate Fallon and Ann O’Sullivan, master trainers at Southern Maine Agency on Aging (SMAA), contracted with the State of Maine to develop the train-the-trainer workshop for associate trainers, and the participant and trainer manuals. The draft manuals were reviewed by Drs. Ken Hepburn and Linda Samia. Participant manual drafts were then reviewed by several SMAA Savvy 2 alumni, and their feedback incorporated. Manuals and accompanying feedback forms were given to participants in four Savvy 2 classes in different parts of the state, leading to the final version. The trainer manual was given to Maine’s Savvy 2 master trainers for review and comment. The draft manual was given to associate trainees to read prior to the training workshop, and their feedback was also incorporated into this final version. Use of this trainer manual in the development of each trainer’s notes is an important way to ensure fidelity to the Savvy 2 program. Maintaining Fidelity to the Program When delivering the Savvy Caregiver Advanced program, it is critical that trainers maintain fidelity to the curriculum and to the core elements that make the program effective. Introducing new elements or leaving out program components may still provide a quality program, but it will not be the Savvy Caregiver Advanced program and should not be identified as such.
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While individual trainers may use their own words and examples to teach the material, the program should be consistent with the training curriculum no matter who is teaching it. Under the AoA grant, specific mechanisms have been in place to monitor fidelity throughout the State of Maine. When the grant is completed, formal infrastructure may not be available for this. However, each agency delivering the program can consider how to monitor fidelity internally. This might include a trainer debriefing after each series, continued use of the fidelity tool, use of enhanced end-of-series evaluations, or other strategies to insure against program “creep”. Care must be taken to make sure new trainers receive standardized training, understand the curriculum, and have the knowledge and support needed to maintain fidelity to it. The term “core elements” refers to those program components that are key in delivering the program as written. Some are related to the structure of the course and some are related to content. Core elements of the Savvy Caregiver Advanced content include:
Developing understanding of advanced behavior guidance models and techniques to help caregivers as their person’s dementia progresses
Learning about several additional models for assessing their person’s behavior and developing more effective strategies for day-to-day care
Building awareness of resources available to help caregivers with advance care planning, end of life decision making, finding appropriate assistance and respite
Continuing to focus on self-care with an emphasis on redefining the care team
Following through on class material by participating in “Try It Out” activities between classes and reporting back on how things went
Following up on activities tried at home, with feedback from the trainer and the group on effectiveness and opportunities for improvement
Understanding the concept of “being comfortable” as an extension of contented involvement, which is introduced and applied to later stage dementia
Being introduced to the concept of self-advocacy when considering the emotional impact of caregiving (using the Feelings Quadrant)
Core elements of program delivery include:
The program is delivered in 4 two-hour sessions (total of 8 hours)
Classes have 6 – 12 participants
Each participant receives a participant manual and handouts o A list of all the handouts appears at the end of this section
Content for each session follows the trainer manual
Approved Savvy 2 slides are used for each session without additions or deletions
Each session is interactive with coaching
Classes are taught by a trainer who has completed the requirements as a Savvy 2 associate, master, or lead trainer
The Fidelity Checklist developed under the AoA grant can be used to help monitor fidelity. (See the Savvy 2 Policy and Procedure manual for information about this.) Agencies should continue
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to use the end-of-series evaluation form, perhaps with some added specific questions, to ensure fidelity. Debriefing, group discussions, and/or collaboration across agencies may help trainers stay true to the curriculum. Refresher / development training might also be offered. How does a Savvy 1 trainer become a Savvy 2 trainer? Savvy Caregiver Advanced trainers start out as Savvy Caregiver trainers. The process for becoming a Savvy 2 associate trainer (AT) in Maine is similar to the process for becoming a Savvy 1 trainer. The first step is to observe a series being taught, to become familiar with the content and the types of discussion that arise from the group. Trainers can then read the trainer manual and take a Savvy 2 AT training session. After that, they co-teach a series, and then teach on one their own. The Savvy 2 Policy and Procedure manual explains this process in more detail. This trainer manual was developed to assist trainers in learning the Savvy 2 material. In the following sections, each session of the course is explained, with the applicable slides appearing in the text. It is important to read the material thoroughly prior to using it, but then to develop your own trainer notes, that are consistent with the curriculum but reflect your own style for delivery. The intent is not that the information in the manual be read aloud to the class. When developing your notes, consider that some participants may have low levels of literacy and / or health literacy, and use plain language to share the content. After teaching the course, go back to your training notes and reflect on what worked well and what could be improved, and revise your notes (while maintaining fidelity to the program) for next time. The Savvy Caregiver Advanced program has gotten strong positive feedback from experienced caregivers. Thank you for your part in supporting them as they take care of their person.
References
Algase, D, Beck, C, Kolanowski, A, Whall, A, Berent, S, Richards, K, Beattie, E. (1996) Need-driven dementia-compromised behavior: An alternative view of disruptive behavior. American Journal of Alzheimer’s Disease and Other Dementias. 11, 10-19.
Pinquart, M, & Sorensen, S (2006). Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics, 18, 577-595.
Samia, LW, Hepburn, KW & Nichols, L (2012) “Flying by the seat of our pants”: What dementia family caregivers want in an advanced savvy caregiver program. Research in Nursing & Health. 35, 598-609.
Yura, H & Walsh, MB (1983). The Nursing Process: Assessment, Planning, Implementing, Evaluating (3rd ed.). New York, NY: Appleton Century – Croft.
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Handouts / Resources for Each Session
Training sites have electronic copies of the handouts developed for the program. Files and updates are available from the Office of Aging and Disability Services (OADS). Sources are included below for those that may be downloaded / ordered. Session 1:
Demographic data collection tools (if used)
Slide handouts
Caregiving challenges (immediate --> long term)
Behavior Log
Safety at Home for People with Dementia
Try It Out
Paper and pencils for floor plan Session 2:
Slide handouts
Guiding a Task
My Caregiving Team
Paper and pencils for care mapping Session 3:
Slide handout
Ongoing Loss: Ideas that May Help
Internet Resources / Free Internet Tools for Caregiver Communication (print back-to-back)
OOVL Decision-Making Tool
Legal and Financial Planning for People with Alzheimer’s Disease (NIA) http://www.nia.nih.gov/alzheimers/publication/legal-and-financial-planning-people-alzheimers-disease-fact-sheet
Connections books (available from OADS and AAAs)
Maine Hospice Council flyer about hospice (available from OADS)
Alzheimer’s Disease: Care and Support at the End of Life booklet (Dr. Laurel Coleman) (OADS) http://www.maine.gov/dhhs/oads/aging/alz/alzheimer/endoflife_web.pdf
End of Life: Helping with Comfort and Care booklet (NIA) http://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care
Agency on Aging resources: o Agency flyer o Information on living options, LTC assessments o Local resource information
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Behavior Guidance
Try out ADL behavior guidance based on the models.
Continue to focus on behaviors.
Identify a persistent behavioral challenge not associated with ADLs and develop a plan to re-
establish calm.
Identify any pattern of distraction from tasks or activities; conduct close analysis of distraction
antecedents; formulate and test behavior re-establishment strategies.
Strengthen the Care Team
Make and implement communication strategies and/or key decision choices about at least
one part of the team in an effort to improve the situation.
Are there resource needs not met by the current team?
Identify a person or organization you will ask for help.
Work out a plan for asking for help and do so.
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Preparation for the future
Consider long-term challenges and identify key decisions that will need to be made. We will
discuss this next session.
Self care
Identify one caregiving area associated with emotional distress and deliberately make a move
to shift this into something more satisfying.
Before ending class, you may want to take the opportunity to forewarn people that the next
session will include talking about some difficult subjects: grief, loss, later stage care and end of
life. These topics are tough to explore but our goal, as always, is to help inform and empower the
caregivers. This minimizes the chances that they will feel unprepared later, when they may have
to make hard choices.
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Session Three
Materials needed:
Two flip chart pages for future challenges (see suggested format below)
Slide handout
Ongoing Loss: Ideas that May Help handout
Internet Resources / Free Internet Tools for Caregiver Communication handout
OOVL Decision-Making Tool handout
Legal and Financial Planning for People with Alzheimer’s Disease (NIA)
Connections books
Maine Hospice Council flyer about hospice
Alzheimer’s Disease: Care and Support at the End of Life booklet (Dr. Laurel Coleman)
End of Life: Helping with Comfort and Care booklet (NIA)
Agency on Aging resources: o Agency flyer o Information on living options, LTC assessments o Local resources
Also useful, but optional: o Hospitalization Happens (NIA) o Pain in Dementia (AGS Foundation for Health in Aging)
Folder or sleeve to hold handouts
How Did It Go?
ADL behavior guidance
Care team strengthening
Work on caregiver self-care
How Did It Go? (30 minutes)
Open up discussion with how participants are using the models and strategies taught and
discussed in the first two sessions. Are all the models making sense? What parts are they using?
Ask about trying things out and be sure to help them identify if they are applying the models
where they may not realize it. The point is to draw participants’ attention to being intentional in
using these tools and to learn to assess what happens when they do. Becoming familiar and
feeling comfortable with the models is part of the caregiver self-efficacy development process.
Hearing themselves and others describe successes builds this.
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Ask the group about any efforts to identify resources for help with caregiving, and efforts to then
ask for that help. Participants have much to learn from one another about successfully asking for
and obtaining support. What are the reactions to the caregiving team map exercise? Did people
think more about their team? Did they add any informal or formal resources to the list? Have
they thought more about who is helping and who is not? Did they think about situations in which
improved communication might promote additional help? What changes has anyone made?
Some groups respond more readily to the care team map exercise than others. Ask for feedback,
and if there is confusion, clarify where needed. The exercise is intended to help caregivers
consider all the people who may be available to them both now, and when they need more help
later. Be prepared to offer suggestions to groups that are having difficulty “seeing” this, as well as
to participants who insist there is no one who can help them. The exercise is not meant to create
more stress, or lead anyone to feel pressured to make drastic changes immediately. Remind them
of formal vs. informal resources, and assure them that they will leave this session with more
information about formal resources.
Has anyone identified additional caregiving challenges? What have they done to work on
addressing the feelings associated with caregiving and the challenges ahead? As we continue to
ponder the challenges of caregiving, what are they doing to enhance their own well-being? What
steps are they taking to recognize their feelings, and to move themselves to a more powerful and
positive place on the feelings grid? Acknowledge and congratulate them on any examples of self-
care.
Session 3 Overview
In this session we will be looking at some of the longer term challenges caregivers are likely to
face, and considering some of the factors around later stage care, including sharing some
information about formal resources. As you may have alerted them last week, mention again that
today’s topics may create some discomfort. This exercise of looking at loss and what the future
may hold is all part of self-care. Later, we will work on guiding the ADL of bathing.
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Caregiving Challenges
What is the most difficult challenge you
expect to face in taking care of your
person in the next 6 – 12 months?
Identifying Future Challenges (60 minutes)
Found in participant manual pages 34-35
The main portion of this session focuses on the near and long term challenges in caregiving,
including considering what kinds of decisions will need to be made in later stage care. It may be
helpful to prepare participants up front by pointing out that some of what will be discussed may
be uncomfortable for them. Be clear that talking about later stage care, and the associated
emotions, is not intended to upset them. The goal is to offer participants strategies and
information so they are prepared and better able to deal with these issues, rather than feeling
blind-sided by them. Also suggest someone they may contact outside of class in case anyone
requires more support around these issues. This may be the trainer or someone else.
The start of this exercise is an opportunity to remind participants that dementia is a terminal
illness. Medical providers may not have emphasized this point, and some caregivers may have
had trouble comprehending this earlier on. Gently but clearly emphasize that, unless something
else takes him/her first, dementia will end their person’s life. The further along the journey of
dementia, the more the focus is on their person being comfortable. We will talk more later in this
session about hospice and palliative care. Here you can gently introduce the idea that later stage
care will be about comfort and end of life.
Exercise: Use a flip chart and once again prepare columns displaying the core concepts of the
program: behavioral issues, resources, and emotional/practical challenges. Entitle this one “6-12
month challenges”.
6-12 MONTH CHALLENGES
BEHAVIORAL
RESOURCES
PRACTICAL OR
EMOTIONAL
CHALLENGES
Caregiver will need more break time x x
Person may become incontinent x
Person could start to wander x x x
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Participants may react by saying, how could I possibly know what the next year will be like?
Reassure them, this is not exact; no one really knows. But based on the changes they’ve seen in
the past 6-12 months, what do they think it will be like caring for their person a few months in
the future? How much more help might they need? What kind of help? Will they be able to
manage at home? And what kinds of decisions might they need to be making? Give this a little
time so they can really start to consider these questions. Keep a list on the flip chart, marking the
corresponding categories for each. Invite the group to continue to add to this list.
Grid
Once you have a list, move to the feelings quadrant. Use the grid format to help participants look
at the feelings they have about these longer-term challenges. Where would each of them fall?
The exercise should clarify for them that this is an area likely to produce negative and powerless
feelings. It is important to acknowledge and validate this experience. Because they know how
this model works, remind them that “doing something” can move their feelings to more positive
and powerful quadrants.
Encourage them to reflect on the successes they’ve already had in guiding and shaping behavior
and in dealing with other caregiving challenges, showing them that they know how to shift their
feelings to more positive/powerful positions on the grid. In later stage care, doing something that
allows them to see that their person is being comfortable can produce the same positive and
powerful feelings of success. Remind them, too, that we have added the concept of ‘self-
advocacy’ as a tool to move from powerless to more powerful states. Also point out that taking
informed action to assure the kind of end of life they and their person would want will position
them for positive / powerful feelings. As part of making a plan, today they will receive
information about resources that may help in the future.
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Loss and Grief
Found in participant manual pages 35-37
Here is another spot where the group will be confronted with a difficult topic. Take it slow and
check in from time to time to see how they are doing.
You will offer participants language and categories for a number of feelings that are all under the general heading of grief and loss. Focus on the extent to which participants are already dealing with these feelings. Remind them that these emotions are an important part of their experience. Once again, this isn’t to upset them, but to give them an opportunity to acknowledge and consider their feelings in order to identify support and resources for the future. We will also touch on the notion of “reestablishing” their lives after this career of caregiving has been completed. This is a difficult topic for many. Our purpose in introducing the topic of “reestablishment” is simply to introduce another element of being savvy: that a time will come when life again changes for you dramatically. Some forethought is prudent. Follow the bullet points on the slide to define the different types of grief. There is some overlap in these so take the time to make distinctions. Often caregivers will experience much validation in this.
Ongoing loss: This refers to the series of “little losses” in dementia that happen over time for
both the person with dementia and the caregiver. Although each loss on its own may not
seem big, the cumulative effect is significant.
Anticipatory Grief: Anticipatory grief occurs when a loss is imminent, whether someone is
actively dying or has received a diagnosis that indicates end of life is approaching. It may
create a sense of mourning that lingers throughout the journey of dementia, or it may be
experienced when the end of life is near. Others aren’t able to see this kind of grief, so it is
experienced in isolation.
Ambiguous sense of loss: The loss felt when the person is still physically present, but in all
other ways has changed and often feels absent. Others don’t see this type of grief either.
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Disenfranchised grief: Because others don’t see the ambiguous kind of loss experienced by
caregivers, they can’t be supported or validated. This kind of loss is not socially recognized,
leaving caregivers feeling disenfranchised.
Be sure to make the clear connection between other people not being able to recognize their grief experience and therefore not being supportive. Here is where the self-advocacy piece comes back into play for them. Their sense of loss and grief will remain unacknowledged until they communicate what they are feeling to their caregiving team. Otherwise it remains invisible to others. It may be helpful to suggest that dementia presents a gift of time: time to reconnect, to say what needs to be said, to find closure. It may also be a time to record the person’s memories while they are still somewhat intact. And it’s a chance to deliberately slow down. The extra time it takes for people with dementia to perform tasks often causes frustration for caregivers, but encourage them to make use of this to slow life down in ways that nurture them whenever possible. The grief they experience while caregiving does not diminish the grief they will experience when their person dies. However, there will be a new level of loss and grief after death. They will lose their person, but they may also lose their daily routine, their sense of purpose, and their focus. They may feel they have too much time on their hands. They will also likely feel relieved, and it is crucial that they understand that this is normal and not a reason to feel guilty. Give participants a chance to discuss how all this feels, and what they expect. Touch upon the importance of considering what their lives will look like after caregiving. What will be the new “normal”? Creating some purpose outside of caregiving will help them make the transition later. When discussing the extra challenges created on special occasions (holidays, birthdays, anniversaries) be sure to remind them about role flexibility as discussed in session six of Savvy 1. Families with more role flexibility are more resilient. Remind them, too, that after their person dies there will be new challenges on special occasions, and to not be too surprised at how they may react on those days. It is one more opportunity for good self-care. Throughout this journey, one critical piece of self-care is support. Remind participants to help their care team understand how they are feeling so they can feel validated and supported. Encourage them to seek out support through family, friends, community and support groups.
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Future Challenges Here is where you will use the third and final flip chart with categories, to list 12 months+ challenges. This exercise adds to the other lists of anticipated challenges that the participants began and have continued to develop and refine. Be sure to keep previous “Challenges” flip charts posted for comparison, and to continue to add to those if other thoughts arise.
12+ MONTH CHALLENGES
BEHAVIORAL
RESOURCES
PRACTICAL OR EMOTIONAL CHALLENGES
How will I know it’s time to move him? x x
What will keep her content? x x
Will I be able to keep doing this? x x
The focus of this exercise is: what do they expect to happen as the person’s life comes toward its end? What are the concerns about safety? What kinds of help will they need? How will they maintain self-care? Ask them to think about what their person was like 12 months ago. How different are they now? Then, can they project that level of change into the future and imagine how different it will be? This is the time to ask them to imagine if they will realistically be able to continue to manage their person’s care at home, without extra help?
Later Stage Choices
Care choices Comfort choices Location choices
Later Stage Choices Found in participant manual pages 30-32
Guide the group through some of the choices they may potentially have to make.
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Encourage caregivers to consider initiating conversations with their person’s health care
provider (doctor, nurse practitioner) about choices and wishes with an emphasis on including
their person in conversations and decisions as long as possible. In order to be an effective self-
advocate, the caregiver needs to be a full member of the health care team early on.
Care choices involve thinking about what will be acceptable in terms of diagnostic work-ups,
treatment for other issues, procedures. Which symptoms demand diagnosis? Which
diagnoses demand treatment? Have them consider things from colds to flu to pneumonia to
cancer. What will be appropriate as dementia progresses? Questions to guide them might
include:
o What are the short and long term goals of care?
o What outcome might they reasonably expect?
o How would any choice impact what gives life meaning for the person?
o What is most consistent with their goals?
Comfort choices involve considering the tradeoffs between treatment and comfort. They may
be faced with choices down the road for their person regarding feeding tubes, ventilators,
antibiotics. Persons with dementia may develop infections, get the flu or pneumonia. Should
this happen, caregivers face a decision: treat the condition – and prolong the person’s life or
not – with the possibility that the condition will end the person’s life. More and more, medical
providers are recognizing that comfort can be a more realistic and humane care strategy than
continuing to engage in what may be futile efforts to cure. This approach is palliative care,
which seeks to balance the discomfort that might be involved with treating life-threatening
conditions against a broader concern for keeping a person at ease while the natural processes
of an incurable condition take their course. Have they weighed the risks and benefits of
treatments? Have they thought about how hospice care could support later stage care?
Location choices address where their person would receive the most comprehensive care,
and have their safety and well-being managed in a way that does not drain the caregiver. As
demands increase, how to meet these demands must include consideration of where to best
meet them.
It is critical to remind participants that they are their person’s advocate. They have the right to ask all the questions they need to in order to feel equipped to make the best choices possible. There are certain steps caregivers need to take to be able to be an effective advocate for their person, steps that will allow them to work collaboratively with medical and legal systems. The first step is to obtain Power of Attorney for Health Care which allows caregivers to make decisions about the person’s care. Under some circumstances, they may need to become the person’s guardian and/or conservator. This may vary by state. Ideally, the person should already have a written Advance Directive for health care. At some point, a person with dementia will no longer be considered legally competent to sign such documents. It’s important for caregivers to
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understand that they can use their in depth knowledge of their person to make some very good guesses about the care their person would most want, based on their values and what gives their lives meaning.
Later Stage Decision Making Here is one more chance to open up the discussion to major decisions caregivers will face. Possible areas to include: getting more help; when to choose hospitalization; moving the person to long term care; when to call hospice. Ask them to consider who will be involved in these choices. Have them think about their care team map. Who is likely to want to be involved? Has the person with dementia completed an advance directive? Is there a power of attorney for healthcare? Where might family conflicts present a problem? Briefly define different options: living options (nursing facility (NF), residential care), and care options (Do Not Resuscitate orders (DNR); palliative / hospice care; respite). Be sure they are aware that many facilities have lengthy waiting lists. Don’t wait until they need to make a change. Add names to waiting lists early. If they aren’t ready, they can always say, “no thanks”. Finally, go back to the feelings grid and remind them that thinking about all of this information takes an emotional toll. This is part of ongoing loss. Encourage them to practice good self-care.
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OOVL Walk Through Use the slide with the OOVL to walk through an example of using this tool to make a decision about long term care. Point out that this OOVL demonstrates that sometimes there is no perfect option. This decision making process helps to sort through the conflicting options.
Resources Found in participant manual pages 39-41
Review available resources. Briefly describe and pass around, or make available on a table. There will not be time to go into any of them in depth. This brief break provides a change in energy from the grief conversation to moving on to guiding an ADL. Because multiple resource handouts will be shared, it may be helpful to offer a folder or envelope to contain them. Resource handouts that are part of the Savvy 2 curriculum include:
Connections book
Hospice flyer (Maine Hospice Council / OADS)
Ongoing Loss: Ideas that May Help handout
Internet Resources / Free Internet Tools for Caregiver Communication handout
Alzheimer’s Disease: Care and Support at the End of Life booklet (Dr. Coleman / OADS)
End of Life: Helping with Comfort and Care (NIA)
Legal and Financial Planning for People with Alzheimer’s Disease (NIA)
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Other handouts to make available include:
Agency on Aging brochure
Other local resource information
Living Options in Maine handout
Long term care assessments explanation
Hospitalization Happens booklet (NIA)
Pain in Dementia (AGS)
Guiding Behavior in
Activities of Daily Living
(ADLs)
Guiding Behavior in ADLs (20 minutes) Found in participant manual pages 16-20
Once the resource materials have been shared, draw participants’ attention back to the final topic of the session, walking through a bathing activity using the models. Encourage them to translate this discussion into trying this out at home.
Guiding a Behavior You will be starting out with a brief overview once again of all the models and how they contribute to the Problem Solving Process. The models are just tools for guiding and structuring their person’s behaviors. The core of the diagram is the problem solving process. The text boxes on the left and right represent the importance of the Anchors of Contented Involvement and the contribution of the ABC model and the Need-Driven model, along with the influence of the environment. Although the slide appears quite complex, utilize it to emphasize to participants that they have more tools at their disposal for guiding and structuring behavior.
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For this ADL we will focus on washing and bathing. These are often problems for caregivers of persons in the later stages of the illness, so this will likely tap into some actual issues. This section should be approached as a problem-solving exercise. Ask participants to identify problems they are having or observing in this area. You may use these responses to create a scenario for the problem solving exercise. You won’t be able to address all issues, but you may be able to address a reasonable set of them. Stay aware of time and be cautious to maintain the group focus on walking all the way through the task as opposed to spending too much time on one issue.
Assess If time allows, you may start by asking participants to describe what they have seen as a troubling or disturbing behavior related to bathing. It is important for the caregiver to identify the most precise and specific details of what their person did (“He pulled away” rather than “He refused to bathe”). Initially, identify what happened rather than why it happened. Next, have them brainstorm possible antecedents, and the possible needs the behavior may have been communicating. This slide offers a guide to the things they will need to consider as part of their assessment process. Be sure to remind participants that a good estimate of what stage of dementia their person may currently be in will help them design appropriate support and structure strategies for activities. Walk through the items on the slide with some examples. Use examples from the group if possible, otherwise prepare some of your own. Use this as a way to demonstrate how to think about all possible factors impacting behavior.
Personal history: What has this person’s bathing routine been? Showers or baths? Morning or
evening?
Background factors: Any health conditions that require special care?
Self-management: What are they capable of doing on their own? With some guidance?
Antecedents: How has this gone in the past?
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Cooperation: How much do they do? Is there any resistance?
Comfort and discomfort: How do they express these? How can the caregiver distinguish their
person’s experience, i.e. are they afraid or are they cold?
Reactions: How do they respond to different types of guidance?
Expressed needs: Is the caregiver able to sense this? Is there any comfort or pleasure? Fear or
pain?
Environment of care: Must the activity occur in this place? Are there more comforting
options?
Plan Keeping in mind that even bathing is an opportunity for contented involvement / being comfortable, start with considering what part the person is capable of playing in the task. How much participation may the caregiver reasonably expect? Also, they need to watch for signals from their person: are they ready? Feeling resistant or agitated? Are there parts of the activity that the person enjoys? Walk through the items on the slide to guide the discussion. Offer suggestions for making the task more successful.
The right moment: Do this when it works for them best (when they are rested and relaxed)
whenever possible.
Location: Where is the best place to do this activity?
Modesty and intimacy: Only uncover areas being washed; try to have the person wash their
own sensitive areas. Also, ask the caregiver to consider their own comfort level with this
activity. How can they work through their own discomfort? Is this time to enlist some help?
Strategies and equipment: How do they start? What is the routine? Sponge baths are ok too.
Bath seat? Flexible shower hose? Keep the person from getting chilled. Strive to make the
experience pleasurable for the person. It should be pleasurable for the caregiver as well. It
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can be a gentle moment and if it goes well for the person, the caregiver can take pride in its
accomplishment.
Physical comfort: Older skin is more fragile and sensitive. Consider water temperature and
cleansing materials.
Next steps: Be ready for drying and dressing.
Implement The planning phase includes some consideration of goals and expectations. Remind participants
that these must be adjusted accordingly as dementia progresses. Preventing skin breakdown is
likely to remain a goal throughout the course of dementia, but standards of cleanliness, personal
hygiene and dress may loosen over time. Safety and comfort are always important goals as well
and they may take on more importance than appearance over time. Remind participants to
maintain awareness of the aim of the bathing task.
This is an opportunity to deliberately create antecedents to set up a successful experience. What
cues will they be using and how will they communicate? What’s the emotional message? At this
point the caregiver has considered initiating the plan, guiding the person to the location where
the activity is to take place, the removal of clothing, cleaning and drying the person, the replacing
of briefs and clothing, and guiding the person back to the place where the next activity is to take
place. This step is the “try it and see how it goes”. Encourage them to keep track of their efforts
and how each step goes. If the situation calls for it, they may need to make adjustments during
the task. Remind them to keep track of any changes they make to the plan as well. All this
information is important for the evaluation step.
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Evaluate
Overall, were the goals reached? If not, what fell short? This is the caregivers’ opportunity to
review each step of the task.
Were there parts of the process in which the person was cooperative and comfortable? What
were the antecedents of these parts? What approaches were used? Overall, did the activity seem
to fit the person’s abilities? Encourage them to make note of what went well so they can identify
what made it go well (antecedents and strategies) and then reproduce this in other activities.
If there were parts during which the person was uncomfortable or uncooperative, what did the
caregiver do to restore calm? Were there any unexpected events? If any difficulties were
encountered, in terms of the person’s behavior, what might have been their meaning? What
might they have been communicating?
What are the main things learned from evaluating the task that will go into the next assessment
phase to alter the plan?
If, as a trainer, you would like to read more specific tips about bathing, information is available
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Strengthening the Care Team
Found in participant manual pages 27-30
Ask participants to share what steps they have taken to strengthen their informal care team, or
options they are considering to help reshape their care team picture so it better addresses their
needs. What strategies have people tried? Remind participants of the activities in which they can
engage to strengthen their care team. They might ask for more help, remove someone or some
organization from the team or renegotiate relationships to make them less draining. Ask what
else they have considered or tried.
What else might they have done? Consider sharing information with team members or
identifying new resources. Do they have any new ideas for how to ask for help?
Challenges and Self-Care (15 minutes)
Found in participant manual pages 33-37
Be sure you have posted the three lists of “Challenges” that caregivers have been working on
each week. Here is an opportunity to consider how those challenges feel, which challenges they
may have addressed during the series, and which they will feel better prepared to address
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through changes in their care team. Their feelings about the challenges they listed may change as
they alter their care team and feel more empowered through their own self-advocacy.
Grid
Use the feelings quadrant to evaluate shifts in caregivers’ emotional state now that they’ve gone
through the series and created more strategies for getting support. Start with the current
challenges list.
Considering the immediate challenges identified in the first session, how have participants’
feelings changed? What have they done to address any of these challenges?
Considering the challenges listed for the short and long term, how are participants feeling? Have
they garnered better understanding of these challenges? Inquire about their feelings relative to
decision making regarding their care team, and end of life care specifically. Use the quadrant to
plot some of these feelings to see if they have shifted on the grid. Accentuate any actions they
have taken which created more positive or powerful movement for them.
Remember that they have also spent time focusing on all they have lost and will continue to lose.
These feelings may be more tender after discussing later stage care. If feelings of despair or
defeat emerge, it may be possible to work with them within the context of accepting that the
care they are providing is the very best they can do and that their person’s needs may reach a
point where they exceed any caregiver’s capacity. This is a form of acceptance, and it can pave
the way for them to appreciate all their good work.
Improving the care team is an action caregivers can take to help them move to a more positive
and powerful state. Reinforce this. Encourage them to get more and better help from informal
resources and identify and access formal resources.
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Program Re-Cap
Behavior guidance
Emotional and practical challenges
Care team / Resources
Program Re-Cap (20 minutes)
This re-cap is structured to match the three main topics of the program, as listed on the above
slide. Here you can pull together the threads of all the themes of the program.
Behavior Guidance
This begins the main part of the recap. We start with a final opportunity to review the models
and address questions about them. The five slides that follow are the main slides used to
illustrate the behavior guidance strategies taught in the original Savvy program and also referred
to throughout Savvy 2.
Problem Solving Process
Found in participant manual pages 16-20
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This is the framework we have offered each week to help participants design caregiving
strategies. This model will be quite familiar by now. This is a cyclic model. Each cycle provides
information to help design the next cycle. Remind participants that this is just a framework. It is
intended to help them think about all aspects of an activity, without the expectation that anyone
will go through all these steps for every activity. They are welcome to use the parts of the process
that resonate for them, and return to this framework to address activities that are especially
challenging for them.
Assess: Examine the situation. Determine what is happening. Consider what might have
produced the situation.
Plan: Make a plan of action, based on the assessment of what you think is going on in the
situation.
Implement: Follow the plan of action as carefully as possible, and make note of how things go.
Evaluate: If successful, repeat. If there are problems, or if it just doesn’t work, note observations
from the implementation phase of the plan. Then, start again with the assessment step using this
information.
Fit Activity to Ability
In Savvy 1, we referred to this image as the Anchors of Contented Involvement. This illustrates
the point that, in almost any activity there is a process of continuous and often repeated
assessment that goes on. In this process, we use what we know about a person to adjust tasks
and activities as needed. Caregivers use what they know to select appropriate tasks (Person); to
adjust the kind of task they offer, and the way it is set up (Structure); and to determine what type
of help they give in order to get and keep the person going in the task (Support). At the same
time, using their powers of observation, they continually readjust their strategies based on how
their person is reacting to the task.
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Offer a reminder about the staging system information in participants’ original Savvy Caregiver
manual. Revisiting this information occasionally will help caregivers to adjust their strategies as
dementia progresses.
ABC Model
This illustrates the ongoing message that all behavior has meaning; all behavior is a form of
communication. It is a reaction to or result of something that occurs beforehand. It may not be
self-directed or seem to be directly connected to any stimuli. It is up to the caregiver to figure out
what the behavior means.
This model, based on the work of Dr. Linda Teri, outlines the process of looking back to what
happened before the behavior in order to determine what created it.
Antecedent:
Person decides something
Person experiences something
Person hears or feels something
Behavior:
Person does something; takes some action
Consequence:
Something happens as a result of the action that is taken
Some results serve to produce a new action – possibility of escalation
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The Environment of Behavior
Found in participant manual pages 11-14
Always consider the impact the surrounding environment has on behavior as part of assessment
and planning. The environment may be considered an antecedent in the ABC model.
Environment can stimulate or respond to behavior.
Encourage caregivers to always think about where care takes place. Sometimes people get stuck
assuming care must take place in certain designated spaces. If there are places where their
person is more cooperative (comfort spots), caregivers may choose to make creative changes in
where activities take place.
Wherever possible, caregivers will have more success when they can accommodate, simplify the
surroundings, make it easier for their person to focus, and reinforce contented involvement. Also,
they can watch for patterns in their environment to track which places tend to be comfort spots
and which tend to be trouble spots.
It is always important to consider safety issues as well and address them as they arise. Enhancing
home safely is vital, and how to do this may need to be revisited as things change.
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Need-Driven Behavior Model
Found in participant manual pages 9-11
This is one more model that provides a way to think about behavior. Within the framework of the
Problem Solving Process, this model is especially helpful during the ‘assess’ and ‘evaluate’ steps.
Unexpected behaviors may be anything that is puzzling or surprising for the caregiver. This is one
more way to think about the meaning behind the behavior.
Background Factors: There are some things over which the caregiver has no control which
contribute to behavior. Dementia is progressive, and this progression itself also has an increasing
influence on behavior. These background factors may also affect current factors.
Current Factors: These are things that impact their person’s behavior which the caregiver may in
fact have some control over. Attending to these will minimize disruptive behaviors.
It is important to point out that, while the model appears focused on what might be called
troubling behaviors, it is more general in nature and may be quite helpful when the caregiver is
thinking about structuring and guiding any activity.
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Emotional and Practical Challenges
Found in participant manual pages 34-37
This is an introduction slide to the next section. You just reviewed the challenges earlier in the
session. Now once again the emphasis is on the importance of keeping the emotional impact of
caregiving in mind and what steps to take to strengthen the caregiving situation in whatever ways
possible.
Caregiving Challenges
Immediate
6 – 12 months
12 months and beyond
Caregiving Challenges
To continue the emphasis on addressing the three major themes of the program, remind
participants once again about the challenges they have stated they are or expect they will be
facing. Congratulate them on identifying and speaking up about these challenges. Many are
taking steps to address them already. Everyone has now considered how they may best prepare
for addressing more in the future.
Looking Ahead
Loss and grieving
Later stage choices
Later stage decision making
Looking Ahead
This slide revisits the discussion topics from week three. All of these involve decision making for
the caregivers, and having a sense of what their person would want. They all also strongly impact
how the caregivers are feeling. Are there any lingering thoughts or questions about these at this
point?
Taking the time to consider these issues and all the options involved produces feelings. This is to
be expected. Taking action to address these feelings will help to move them to more positive and
powerful parts of the feeling quadrant.
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Grid
The feelings quadrant is a simple but useful tool, and caregivers should be encouraged to keep it
in mind and to use it from time to time. Being in touch with their feelings during this taxing time
is important. They know how to identify where their feelings are on this grid, and through letting
go, making a plan, self-advocacy and putting their plan into action, they have strategies for
moving to a more positive and powerful place.
OOVL
This slide reminds participants about the decision making tool. There is a strong link between the
OOVL and two key parts of this program: behavior guidance and team strengthening. They may
use the OOVL to help sort through the options they have and outcomes they would like in
designing and structuring a task. In adjusting the members of the care team, the OOVL may also
be helpful in making choices around how to strengthen the team by clarifying where to get more
support and where to create more distance.
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The Care Team
Strengthening and realigning the team
Adding formal resources to the team
The Care Team
The final part of the recap is a reflection on the care team. The care team is a critical resource as
their person progresses. Remind everyone about both informal and formal resources. Be sure to
remind participants about the resource materials that all participants received. Tap into these as
needed. Don’t wait until there is a crisis.
This is also the opportunity to remind them that in addition to the other formal resources we
have offered them, they are always welcome to contact their Agency on Aging as things continue
to evolve. Hand out reminders of support groups or other caregiver services in your specific area.
Thank you
for all that you do!!
As this is the final class, you will have class evaluations for everyone to complete. While they are
working on these, hand out personalized certificates of completion.
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Maine Statewide Collaboration and Resources The State of Maine is offering Savvy 2 classes under a one year no cost extension to the Administration on Aging ADSSP grant, which runs through August 31, 2014. Only the series’ funded by that ADSSP grant will require the current USM pre-surveys to be sent to participants. Other grants, such as the Dementia-Capable Systems grant through the Maine Office of Aging and Disability Services (OADS), will have separate requirements for data gathering and reporting. Savvy 2 will also be offered through each AAA’s Family Caregiver Support Program (FCSP), as part of meeting the Agency on Aging funding requirements through their state level contracts (Rider A Performance Objectives). Agencies may also identify other funding sources to continue to offer Savvy 2. These might include sponsorships, other grants, tuition, donations, or other ways that the agency develops to sustain the program. Plans for continued sharing of ideas and lessons learned, related to teaching the course, monitoring and maintaining fidelity, and keeping trainers up-to-date, will be discussed and formulated during this grant extension period. During the Administration for Community Living (ACL) grant extension period, the resource people for Savvy 2 associate and master trainers in Maine are: Christine Merchant, Grants Manager Office of Aging and Disability Services 207-287-7134 [email protected]
Contract / grant requirements Training opportunities Funding Fidelity
Kathryn G. Pears, MPPM Dementia Care Strategies, Inc. 207-468-0705 [email protected]
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Linda Samia, RN, PhD, CNL Assistant Professor, School of Nursing University of Southern Maine 207-780-4437 [email protected]
Program evaluation
Core program elements and fidelity
Publication(s) After the grant extension period, it is anticipated that statewide collaboration on this program, including information-sharing, identification of funding opportunities, and ongoing skill development, will continue. When the post-grant structure becomes clearer, all associate and master trainers will receive updated information, which can then be incorporated into their trainer manuals for future reference. As trainers, and authors of this manual, we want to recognize all the effort we know has gone into your becoming a Savvy 2 trainer and teaching the course. The research has already shown us how important this program has been for participants. Thank you for your time, energy, and commitment.