Table 1 Researchers’ studies

1 (Canada)

2016

(McCleary et al., 2018) [26]

Exploring family and staff experiences of end of life and end-of-life care for people with dementia

Multiple focus groups

Thematic analysis

19 family members and 77 care staff in long-term care homes

(19)

Three themes emerged: “knowing the resident,” “the understanding that they are all human beings,” and “the long slow decline and death of residents with dementia.”

2 (Germany)

2013

(Schmidt et al., 2018) [27]

Identifying the needs of people with advanced dementia in their final phase of life and to explore the aspects relevant to recognize, and how to meet these needs

Multi-perspective qualitative study using grounded theory methodology conducting group discussions, individual interviews, and participant observation

Grounded Theory

42 health professionals, 14 relatives, and 30 residents observed at nursing homes (0)

Physical needs: “food intake,” “physical well-being,” and “physical activity and recovery.”

Psychosocial needs: “adaptation of stimuli,” “communication,” “personal attention,” “participation,” “familiarity and safety,” and “self-determination.”

Spiritual needs: “religion.” Results revealed a multitude of key aspects and stressing the importance of personhood.

3,4 (UK)

2012–2014

(Moore et al., 2017) [28]

Understanding the experiences of caregivers during advanced dementia, exploring the links between mental health and experiences of end-of-life care

Mixed methods of a longitudinal cohort study and individual interviews

Thematic analysis

6 family caregivers at home and 29 at care homes

(12)

For family caregivers three main themes emerged. “Importance of relationship with care services,” “understanding of the progression of dementia,” and “emotional responses to advanced dementia.” Family caregivers’ ability to control and influence end-of-life care was overarching.

4,5 (UK)

2012–2013

(Davies et al., 2017) [29]

Exploring the views of family caregivers about quality end-of-life care for people with dementia

Using in-depth interviews analysed using thematic analysis Purposive sampling from a third sector organisation’s caregiver network was used to recruit

Thematic analysis

47 family caregivers including one recently diagnosed, 14 currently caring, and 32 bereaved family caregivers

(32)

Quality end-of-life care for people with dementia is perceived as “fostering respect and dignity,” and “showing compassion and kindness.”

4,6 (UK)

2009–2010

(Harrison Dening et al., 2012)[30]

Exploring whether people with dementia and their caregivers were able to generate and prioritize preferences for end-of-life care

Nominal group technique

Thematic content analysis

17 interviewees; 6 people with dementia,5 caregivers, 6 dyads of people with dementia and family caregivers (0)

“Quality of care,” “family contact,” “dignity and respect” were ranked as significant themes by all groups. Analysis of transcripts revealed three main themes: “Quality of care,” “independence/control,” and “care burden.”

6 (UK)

2013–2016

(Bamford et al., 2018) [31]

Identifying key components of good end-of-life care for people with dementia and to inform a new intervention

Semi-structured interviews, focus group interviews, discussions, and observations of routine care

Thematic analysis prior to integrative analysis which resulted in key themes across stakeholder groups

259 interviewees; national experts, service managers, care staff, people with dementia, family caregivers, health care professionals (12)

Seven key factors were required for the delivery of good end-of-life care: “timely planning and discussions,” “recognition of end of life and provision of supportive care,” “coordination of care,” “effective working relationships with primary care,” “managing hospitalisation,” “continuing care after death,” and “valuing staff and ongoing learning.”

7 (Ireland)

2014–2015

(Dempsey et al., 2018) [32]

Exploring the experiences of caregivers who provide end-of-life care for a person with late-stage dementia at home

Semi-structured interviews were conducted with current and past family caregivers

Data was analysed using interpretative phenomenological approach

17 current family caregivers and 6 past family caregivers

of persons with dementia living at home (6)

Four super-ordinate themes were identified which described the challenges faced by caregivers at different stages of their caregiving journey. “The experience of dementia grief,” “parenting the parent,” “seeking support,” “death, dying and life after death.”

8 (Portugal)

2015

(Lillo-Crespo et al., 2018) [33]

Identifying the strengths and weaknesses in daily life perceived by people with dementia and family caregivers in seven European countries

22 in-depth qualitative case studies were completed in seven European countries across a range of care settings considered typical within that country

Case study method, a constant comparative method with thematic synthesis

56 interviewees; 22 relatives,13 health care professionals, and 21 persons with dementia in 8 Scottish, 9 Spanish, 6 Swedish, 6 Finnish, 7 Slovenian, 7 Czech Republic, and 13 Portuguese

(0)

Identified themes were “Early diagnosis,” “good coordination between service providers,” “future planning,” “support and education for family caregivers,” “enabling the person with dementia to live the best possible life,” and “education on advanced dementia for professional and family caregivers.”

9,10 (Japan)

2017

(Watarai et al., 2019) [34]

Identifying what the components of the good death with dementia are and what the common components or individual components for people with dementia, family caregivers, and medical professionals are.

To explore different views between the three groups.

Semi-structured interviews were conducted with current and past family caregivers

Thematic content analysis

10 people with mild cognitive impairment, 10 family caregivers, 3 physicians, 4 nurses, 6 care workers

(0)

“Maintaining dignity,” “Natural care,” “Family relationships” were common categories among three groups and found over 70% of frequency in each group while “Proper medical care,” “Familiar environment,” “Economic power” were different priorities among these groups.

11 (Japan)

2016

(Nishimura et al., 2020) [35]

Conceptualising a good end of life for people with dementia from the perspectives of bereaved family caregivers in Japan

A qualitative study using in-depth, semi-structured interviews focused on the family caregivers’ perceptions of their loved one’s experiences

Thematic analysis

30 bereaved family caregivers

(30)

A good end of life for people with dementia means experiencing death as “Peaceful” while “Personhood” is being maintained at a “Comfortable Place” allowing for feelings of “Satisfaction with life.”

12,13 (Netherlands)

2018

(Bolt et al., 2019) [36]

Investigating loved ones’ experiences with end-of-life care for people with dementia, and compare the nursing home and home setting

Individual, in-depth, semi-structured interviews with loved ones

Thematic analysis, inductive and deductive coding; critical realist approach

32 bereaved family caregivers of people with dementia; 8 from homes, 24 from nursing homes

(32)

The person behind the disease being acknowledged by nursing home staff.

The end-of-life experience of the person and care role of the family is different between nursing home and home care.

(Surrogate) end-of-life decision making raised similar challenges in the nursing home and home setting.

Nursing home and home care professionals should properly inform loved ones of people with dementia about the disease and end-of-life trajectory as this may encourage confidence in decision making even in the case of unknown patient wishes.

12,13 (Netherlands)

2019–2020

Investigating the thoughts of people with dementia about care now and in the future and discussing wishes for the end of life

Individual interviews with people with dementia

Inductive content analysis

17 people with dementia (0)

For the persons with dementia, it was important to live a meaningful life until the end and to be acknowledged as a unique individual. They placed a lot of trust in others to take care of them or to make decisions for them. Although thinking about their future or the end of life was unsettling or frightening for some, most also showed acceptance and contentment with life.

14,15 (Netherlands)

2014–2015

(Lemos Dekker, 2018)[37]

Exploring how people with dementia, their family members, and professional care workers manage the end of life with dementia

Ethnographic study, 18 months of fieldwork, in-depth interviews and focus groups

Thematic analysis

40 interviews with family members, observation people with dementia, and focus groups with professional caregivers

Death was often welcomed by family members as they experienced it as a form of relief, and thus it can be considered as a form of care.

6, 16

(Brazil & UK)

Ongoing at 2020

Understanding what people with dementia consider a good death in light of their dementia diagnosis?

Semi-structured interviews

Thematic content analysis

People who have a diagnosis of dementia (of any type), being aware of their diagnosis, and have the capacity to participate in a semi-structured interview (0)

Data collection is ongoing.