Structuring the Day
The Mutual Benefits of a Structured Day
One Caregiver’s Approach
Eleanor and Richard had retired early to travel, spend time with their grandchildren and expand on their volunteering in the community. Those plans took a drastic turn when Richard’s behavior became increasingly peculiar and it was clear something was wrong. He started to do strange things like remove all the clothes from his closet and put them in the refrigerator. He put mail into the oven. Normally easygoing, Richard became much more easily agitated and quick to anger. In 2006, when a neurologist diagnosed Richard with FTD, Eleanor Vaughan embraced the view that this moment in time is all they have and she became determined to make the best of each day, for both of them.
Eleanor researched and read voraciously to learn about FTD, what to expect, and how to care for someone with a progressive brain disorder. She consistently encountered three messages: plan for success; old memories are the strongest; and structure is important.
Eleanor realized that the time she and Richard spent together was more enjoyable when there was a plan for the day, and when Richard could join in with activities he valued.
From these, elements she developed an approach to caregiving that is designed to maximize her husband’s abilities and make her experience more positive.
“The Pie and the Curriculum”
Eleanor’s first step was to take stock of the things–people, places, activities–that Richard had valued most throughout his life. She did some extensive writing to capture essential memories, information and stories. Richard had an intellectual side that loved history and debate. Vacations always included historical points of interest, and touring all the civil war battlegrounds was a must. Being active in his church and giving back through volunteering were deeply rooted endeavors.
Recording these memories and experiences helped her to capture who Richard is at his core. She then identified a “pie” of six initiators of action, those fundamental needs that motivate us and direct our actions: spiritual, emotional, physical, nutritional, intellectual, and social. It seemed essential that she work with Richard to plan activities in each of these areas into each day to ensure his quality of life as the FTD progressed.
The “pie” and her detailed information about what Richard has valued, enjoyed and identified with most became the touchstones around which each day is organized. Eleanor and Richard have planned activities from each of the six areas into a detailed daily “curriculum.” Each day is scheduled from 6:30am to 10:00 pm for both of them. There is room for flexibility and they do often make changes, but Eleanor notices that Richard’s behavior is more consistent when they adhere to the routine. They both know they will return to the schedule.
In this early stage of the disease, each weekday starts with the same morning routine of showering, eating breakfast, taking medication, attending Mass, doing brain games and having a snack with ½ hour of tv. Richard does volunteer work two days at a nursing home or to homebound elderly. Reading, both non-fiction and fiction, and swimming or other exercise are scheduled each day. Chores are done midday before lunch, and evenings include walking the dog, attending a class or socializing with others. Time for creativity is also built in. Richard has always dreamed of writing a novel and is doing so now by writing for short periods and reading it back while Eleanor types. Soon he will begin to speak his book into a tape recorder.
The neurologist told the Vaughans when he presented the diagnosis of FTD, “from this day forward, your life will be different. You can do anything you have done before or have wanted to do, but will do it differently.” This principle and the need to adapt to changing abilities guide everything they do. Eleanor and Richard review the curriculum every two months and make changes. Now she lists just one day’s activities at a time for Richard, rather than posting the week’s schedule. They volunteer at the nursing home together now because of Richard’s increased problems with sequencing. She fills in the skills that have become more difficult for Richard, and looks for new ways to help him succeed.
Does it work?
Anecdotal evidence from caregivers and physicians indicate that having a planned structure is very helpful for FTD patients who have trouble with apathy and initiation. It allows them to remain more engaged because they don’t have to make decisions about what to do. People with disinhibited behavior tend to benefit from greater activity because problem behaviors are worse when people are bored. The physical activity can also help people with sleep disturbances because they are more naturally tired at night.
According to Lauren M. Massimo, MSN, CRNP, Nurse Practitioner at the University of Pennsylvania Cognitive Neurology Department, there has been no research to date that specifically looks into the effects of a structured day for people with FTD. Studies have looked at social networking and engagement in other dementias and found increases in cognitive functioning, social, memory, and visual spatial tasks. One study of 90 people with Alzheimer’s found that those with greater social engagement during life showed less pathology post-mortem. Richard is enrolled in an observational research study at Penn and his neurologist, Dr. Murray Grossman, is intrigued with the potential to assess benefits of the curriculum in terms of the rate of disease progression.
Key Principles of the Approach
This approach to structuring the day is based on Eleanor’s goal of caring for Richard at home, with the greatest dignity, as long as possible. Each day offers activities that are personally meaningful, carefully matched to his abilities and stage of illness, and manageable for the caregiver. Several aspects of the curriculum contribute to its value:
The “pie” is holistic
Meeting a full array of fundamental human needs remains important despite the progressive decline that defines FTD. By incorporating activities from all six initiators of action – spiritual, emotional, physical, nutritional, intellectual and social — Eleanor has ensured that Richard’s life is varied, stimulating and challenging. The specific activities and his level of participation will change as the disease progresses, but the “pie” provides a guide to continuing to live with dignity.
Activities are highly individualized
The curriculum uses knowledge of Richard’s strengths and interests from the past to inform his activities today. Richard’s career at duPont required a high degree of order and organization, so this structured model fit his style. Even the term “curriculum” connects to his interest in academics and teaching. Other activities such as attending Mass together, swimming and reading about the Civil War are ways to engage his longstanding interests and enhance participation.
Activities are matched to changing abilities
Daily activities embrace the idea that people with FTD can do things they did before they became ill, but will do them differently. Activities are adapted to utilize remaining strengths, minimize frustration, and maximize “success”. Rather than seeing only what a person has lost, focusing on how to adapt interests in new ways can becomes a creative challenge for the caregiver. The goal is to continue the person’s involvement in the fabric of life, at whatever level he or she is able, for as long as possible.
High level of involvement – Eleanor’s high level of participation with Richard is a central aspect of the curriculum’s effectiveness. Her steady presence helps him to stay engaged and provides continuity across settings and transitions. There are other people who take him places as well, but Eleanor is the anchor.
Consistency and familiarity
Richard has good and bad days, and other family or community commitments present their own demands. Eleanor is quick to point out that though they may deviate from the plan for a day or maybe two, she insists on returning to it the next day. It provides a caregiving routine that makes it easier to engage Richard and provides reassurance to Eleanor.
It can be difficult to find hope and remain positive in the face of such a devastating illness. Eleanor credits the physician who delivered Richard’s diagnosis with setting a positive tone that she appreciated. He did not minimize the eventual outcome, but stressed that much can be done toward insuring dignity and quality of life. Not everyone is as lucky. Many FTD caregivers are told there is nothing that can be done, and that there is no hope of impacting any aspect of the disease. Eleanor’s determination to make the most of each moment they have helps her to push through the darker times.
Is it for you?
People enter the role of FTD caregiver at many different points in the development of symptoms, and have different presenting issues with which to contend. The Vaughan’ know they are fortunate in many ways. Richard was diagnosed relatively quickly, which allowed Eleanor to start interventions while he was still mildly affected. She is also able to devote her full-time efforts to caring for Richard while many people juggle caregiving with employment, raising children and caring for elderly parents. The basic elements of this approach, however, may be helpful for caregivers in a variety of situations. Any amount of routine or structured activity that a caregiver can provide will be better than nothing. Day programs can be an important element in the overall daily structure and a home-based curriculum for evening/weekend hours may benefit both the person with FTD and the caregiver.
Eleanor and Richard know that FTD’s progression is relentless. Richard’s testing confirms the progression of the disease, but the curriculum helps him to stay engaged with many different activities and people. The more managed and structured their day is, the more they can enjoy being together, and the more Eleanor can feel in charge as a caregiver. They are enthusiastic about the positive effects it has in their lives and hope that sharing their experiences will help others.
For more information about the curriculum, contact Eleanor Vaughan via email at firstname.lastname@example.org.
Copyright the Association for Frontotemporal Degeneration, 2009.