The strongest theme that emerged from our analysis is that the staff members base all their work on the very basic concept of personhood. Cecchin [34] points out that attention to preserving personhood in caring for dementia is essential for the physical and mental well-being of PwD. Harrison [35] equates the establishment and maintenance of personhood with well-being. Staff members that were interviewed perceived the PwD as having agency and individuality, acknowledging various levels of personhood [36]. These concepts emerged especially relating to the rituals organized in the event of a death in the group, and also in staff’s perception of the PwD’s status in the day care group setting. Staff recognized the personhood of the deceased group member, as well as the personhood of the PwD left behind still able to attend the group.
As mentioned above, Buron’s “Personhood Model of Dementia Care” [37], (Fig. 1) recognizes three levels of personhood: sociologic, individual and biologic. As the dementia progresses staff focus on a different level of personhood: sociologic in the begining stage, individual in the intermediate stage, and biologic in the advanced stage. We would like to suggest that our data support a slightly modified model of personhood, where the sociologic, individual, and biologic constructs of personhood, as seen by the daycare staff, can remain interwoven even in the most advanced stages of dementia. During all stages of dementia, caregivers remain aware of the sociologic, individual, and biologic personhood of the PwD. This “Sustained Personhood Model for Dementia Care” is pictured in Fig. 2, by the intertwined circles. As the dementia progresses, the personhood that becomes the focus is the one in the circle that is on the top of the three intertwined circles, (that is capitalized, underlined and bolded). However, as our study shows, staff strive to address all three types of personhood throughout the dementia progression since all aspects of personhood are inter connected.
Focusing on the personhood at the social level by the daycare staff contributes to the quality of care they provide. Staff's endeavors to enable social level, create an environment of stability, socialization, and support during the lengthy “ongoing funeral” process [38]. This contributed to the quality of care they provide. Since our study was among staff at daycare centers, our findings about personhood and autonomy may be somewhat different than that reported in nursing home settings (e.g. [39, 40]).
We would like to suggest that the strong theme of autonomy in PwD may be the construct that supports person centered care. There are various definitions of personhood. The definition of Kitwood [41] suggests that it is “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being.” This definition implies “recognition, respect, and trust” [42] which fits our findings to recognize the needs, wishes, emotions, personality, relationships (or need for relationships) and life story of the individual. Our staff recognizes autonomy, which is a key construct of personhood as the main reason that an individual, even with advanced dementia, has the right to know about the death of one of their group members. Our staffs self-reported perceptions relating to agency of PwD is consistent towards a more inclusive vision of dementia care [43].
The details of how to tell, who should tell, when to tell, appear to be dependent not so much on the biologic personhood, but rather on the sociologic personhood [44]. Their rituals of acknowledging death are highly dependent on the “social standing” of the individual in the group, even in advanced dementia. Thus, individual and sociologic personhood, when combined with the staffs’ beliefs to tell about death, influenced the staffs’ practices regarding the PwD’s “right to know” and telling about death. It seems from our research that the staff feel, that the individual and sociologic personhood remain even in advanced dementia. This is reflected in Fig. 2, a “Sustained Personhood Model of Dementia Care”.
We found the personalized mourning rituals conducted by the staff as a theme that reflects the staff attitude of different levels of sociologic personhood, regardless of the stage of dementia. Therefore, we suggest that emotional capacity is a variable that the staff takes into consideration when conducting rituals and is consistent with their belief of the autonomy of the PwD. This is consistent with the literature that reports that PwD maintain a significant level of social agency [45]. The study by Boyle [46] highlights that “people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency,” which is part of the sociologic construct of personhood. The staffs’ self-reported actions are compassionate and consistent with their beliefs.
Yet, despite the staffs strong beliefs about autonomy, personhood and therefore person-centered care (e.g. [47, 48]) some expressed ambivalence about “standards of practice” and a need for additional training. The literature shows that in nursing homes, some evidence-based studies indicate that person-centered care including autonomy, can be taught (e.g. [49,50,51,52]). However, only a few evidence-based practical guidelines for daycare staff on how to deal with death and grieving issues were published [53, 54] despite the studies describing that PwD may exhibit autonomy and emotional capacity even in advance stages [19, 55].
We would like to suggest that our pilot demonstrates that staff beliefs can be channeled into practices that build on a “teachable moment” framework for defining tools and venues to increase daycare staff capacity to implement their attitudes on personhood and autonomy in PwD.
A “teachable moment” is a concept that was popularized by Robert Havighurst in his 1952 book, Human Development and Education. In the context of Education theory Havighurst explained, “A developmental task is a task which is learned at a specific point and which makes achievement of succeeding tasks possible. When the timing is right, the ability to learn a particular task will be possible. This is referred to as a ‘teachable moment’” [56]. The phrase sometimes denotes not a developmental stage, but rather “that moment when a unique, high interest situation arises that lends itself to discussion of a particular topic”. When the student is personally engaged with the issues and problems [57].
These moments can (and often do) come when least expected. A “teachable moment” is often best demonstrated with a significant emotional or traumatic event, the emphasis being on the ‘moment’ and not on the lesson. (An example would be, after a car accident; when the use of a seat belt has obviously saved a life, or conversely, when a life has been lost when a seatbelt was not used). We would like to suggest that the death of a group member can be used as a “teachable moment” to teach staff about the “Sustained Personhood Model of Dementia Care”.