Themes with codes common to all data
Pain and symptoms controlled
Having “Pain and Symptoms Controlled” is essential for physical functioning and supports all other themes. Nevertheless, it is insufficient in and of itself because if achieved while psychosocial and spiritual needs are not met, people with dementia may not experience a good end of life.
Listening to residents, they definitely didn’t want some symptoms pain, dyspnea, and those kinds of things, quite concerned about that, particularly pain. But then you talked further this notion was kind of psychosocial comfort as well. (CA)
Maintaining function is deemed to be relevant until the end of life as much as possible from the perspective of family caregivers because being able to eat, being able to smile, being able to talk is valued at the end of life to meet the persons’ psychosocial needs. (JP)
“Pain and Symptom Controlled” affected dignity if it was ignored due to a lack of compassionately or empathically caring about the other and good relationships. People with dementia often experience difficulty communicating, so caregivers’ attention to persons’ health status affects dignity.
I often saw the pain was also connected to dignity. So, if the person was suffering or in pain, family members would often say this is not a dignified end of life, yes. (NL)
Cross-cultural difference: The category “function preserved” in this theme was not emphasized in a study from the UK. Further, perceptions on the use of opioids at the end of life differ between the cultures. It is perceived as usual in the Netherlands but exceptional in Portugal, Brazil, and Japan. In Ireland, Canada, and Germany, people receive opioids occasionally.
Being provided basic care
Providing basic care is regarded as default; however, it is not always provided to people with dementia. Seamless care is often an issue with changes of care providers or place of care. Providing basic care to highly dependent people for a long end-of-life period is difficult for those involved. People with dementia sometimes experience unclean environments and unhygienic conditions.
It usually was about compassionate care, being clean, loved ones around them, all of those sorts of things. (UK)
Cross-cultural difference: Basic care is different in each country. For example, soaking in a bath is considered standard care in Japan, even at the end of life while it is not generally considered basic care in European countries.
A place like home
People with dementia are usually sensitive to environmental changes. Being in a familiar, preferred place and comfortable environment with familiar people was commonly regarded as important at the end of life across countries.
Cross-cultural difference: Social acceptance of nursing home residence differed across cultures. In the Netherlands, the UK, Canada, and Germany, society considers spending the end of life in a nursing home as the best choice if home is not possible, or at least, as normal practice. However, in Ireland, Portugal, and Brazil, family care is emphasized, and deaths in institutions are negatively perceived. In Japan, some families prefer hospitals to provide “all possible treatments.”
Having preferences met
This theme was particularly important for a good end of life because people with dementia often have difficulties in retaining autonomy due to cognitive decline. Personal preferences should be considered across all themes.
They wanted to have their wishes regarding end of life adhered to. We don’t have advance care directives and dignity law yet. And they haven’t had the family carers have the discussion with the person with dementia regarding their end-of-life preferences. And it was one of the things that came up with the regret of not having had that conversation at the time. (IL)
This was complicated by uncertainty about the person’s preferences and a possible trade-off between personal preferences and “Care for Caregivers.” Retaining good relationships may promote “Having Preferences Met” because this facilitates awareness of the person’s preferences and wishes.
Cross-cultural difference: Across the countries, there is a shared ideal to prioritize the person’s preference, however, different meanings of person’s preferences are discussed. In Japan, spontaneous expressions of end-of-life wishes are appreciated, but making people with dementia decide is considered as putting pressure on them and causing anxiety. When the capacity to express preferences is limited, family is considered best positioned to understand the person’s preferences, and family preferences are often prioritized. In Brazil, people with dementia frequently value family caregivers’ wishes as their own wishes, out of concern to express wishes while depending on others is not compatible with their sense of dignity. Also, persons with dementia may perceive going with family’s decisions is perceived as a positive means to protect their families from caregiver burden. People in the Netherlands also value important relationships over full achievement of their own wishes.
Receiving respect as a person
Receiving respect as a person means being paid attention, being treated attentively, being treated the same as a person without dementia, being free from physical restraints, and being treated by trustworthy caregivers (Table 3). Persons with dementia require assistance with most activities of daily living, including communication, which may threaten dignity. People with dementia in care facilities in any country may feel like they are treated as objects. Compassionate, person-centered, and dignified care all promote quality at the end of life and are associated with relationships.
I think that comes out with a sort of dignity and respect thing that they [person with dementia] wanted to be treated in a certain way and not treated [as] things or treated an object. (UK)
Cross-cultural difference: In Canada, this theme is important in the context of divergent populations such as LGBT. In Japan, receiving “all possible treatment” is perceived as respectful for some people; and doing “nothing” for a dying person as a lack of respect.
Identity being preserved
Loss of identity, for example, through changing personality, loss of abilities, roles, or companions, is a specific theme in dementia progression and involves spiritual and existential issues. Even if an individual’s sense of identity is threatened, maintaining the daily appearance and personal routines, understanding the person’s past, and being and appreciating the person they have been, can improve their end-of-life experience.
From a clinical perspective, we have lots of complaints around end-of-life care from families. And they don’t say “Oh, my relative’s spiritual beliefs were not taken into account and they died.” You don’t even use that terminology. But what you hear, they say is… things like “[He] didn’t even look like my dad anymore” you know. That was important [and] wasn’t taken into account for him. (UK)
Cross-cultural difference: In countries where home care is dominant, preserving identity does not take as much effort and is taken for granted because care is provided by families who know the person’s history.
People with dementia tend to lose social relationships and social interactions, which leads to fear and isolation including at the end of life when people are not mobile. Retaining a sense of connectedness reduces fear and isolation. Sensory stimulation such as hearing, being touched, being in social contexts, experiencing nature and a sense of transcendence can help people with dementia feel connected with the environment and their inner self.
Because they [persons with dementia] can feel compassion and they want the connectedness with others to make contact. (NL)
Cross-cultural difference: In Japan, being connected means mainly family bonds and presence, while the presence of priests is rare. In the Netherlands, Ireland, Portugal, and Brazil, this was also perceived as a religious experience in people with religious beliefs.
Themes with initially divergent codes
Care for Caregivers (not being a burden to others)
People with dementia generally did not intend to be a burden for caregivers in a physical, psychological, economical, or other way. Not wanting to negatively impact on others can be a social but even so a spiritual or existential issue, which may prompt people with dementia to long for death; however, social, and other support systems can reduce the negative impact on caregivers.
Cross-cultural difference: The theme name was discussed and revised multiple times. This theme generated different solutions cross-culturally. In Japan, entering a nursing home was seen as a solution to relieve caregiver burden. This theme could be a reason to request euthanasia in the Netherlands. In Brazil, people tended to offer considerable leeway in their wishes by prioritizing family life.
They [people with dementia] would like the preferences of care at the end-of-life to be acknowledged, they would give their family members total freedom to change whatever decisions they have made if the new decisions would decrease the family's suffering. (BZ)
Satisfaction with life and spiritual well-being
A person’s sense of self, acceptance, pleasure, and feelings of peace were deemed the components of ‘Satisfaction with Life and Spiritual Well-being.” The theme’s codes, such as “Acceptance of life closure” relate to “Satisfaction with life” and is usually part of spiritual themes. This theme was enhanced by relationships, in particular, a person’s “Sense of being protected” by God or others whom they relate to.
Even when they are in very severe advanced dementia, sometimes, when they are connected with people who support their spirituality, sometimes, they can remember things. Sometimes, they can remember names. (PT)
Cross-cultural difference: “Being Connected” with God contributes to “Satisfaction with Life and Spiritual Well-being” for religious people, while for non-religious people, “Being Connected” with family or “Identity Being Preserved” contributed to this theme.