During the initial search, 1801 records were identified. After removing duplicates, 1780 articles were screened by title and abstract for their relevance and removed those (n =1727) which did not meet the inclusion criteria. The 53 complete articles were evaluated for eligibility, and 43 articles were excluded, as they did not focus on dementia, spirituality and older people. One study [33] also included relatives, which we nevertheless included in the analysis, as the data analysis in the article was given separately for relatives and people living with dementia. Therefore, ten articles were included in the critical appraisal (Figure 1).
Study quality appraisal
The selected studies met the main considerations relevant to our study. The most common weakness of these studies was in the statement indicating the researcher's theoretical or cultural orientation. Only one study [23] clearly stated the researcher's cultural orientation. Also, there was an evident lack of information regarding the extent to which the researcher influenced the study. The relationship between the participants and the researcher was clearly stated only in two studies [23, 34]. Further, the studies lacked information on reporting congruity between the philosophical perspective and the research methodology as present in Table 2. However, in keeping with guidance on these criteria, and agreement within the research team, all ten studies broadly met the criteria and were retained for closer examination.
Study characteristics
All studies used a qualitative research design. The ethnographic approach [27], phenomenology [23, 35, 36], grounded theory [37] and observation [27, 36, 38] were used. Interview as a data collecting method was used the most frequently [23, 27, 33, 34, 36–40]. Also, focus groups were used for collecting data [33]. Six studies were conducted in the United States, three in Australia and one in Europe. The total sample from all the included studies presents 177 older people with dementia. The detailed descriptions are provided in Table 3.
Understanding spirituality and its meaning in older people living with dementia
Line−by−line coding for all the studies resulted in identification free codes (n=86), developing primary level (n=13), secondary level descriptive themes (n=4) and two main analytical themes: Spirituality as an inner source of power (1) and Spirituality as connectedness (2) (see Table 4).
Spirituality as an inner source of power
Spirituality as an inner source of power was developed from two secondary−level descriptive themes named Facing dementia and Facing oneself.
Facing dementia
Facing dementia was derived from primary−level descriptive themes: Unanswered questions, Insights into the situation; Hope, love, and compassion; Thinking about death.
Unanswered questions
Many of the studies that we have analysed [23, 34, 36, 37, 40] show that people with dementia often ask questions that mostly remain unanswered. The question "why" is widespread: "why me, can I manage, why did I become ill [23], why exactly me [40]?" We further conclude that older people with dementia also ask themselves what they can learn from the illness [23] and how the disease will progress, and what will happen to them [34, 36]. Such questions, which most often remain without answers or satisfying answers, bring older people with dementia unrest, frustration, and feelings of uncertainty [23]. Due to their awareness of mortality, such individuals can, therefore, become even more vulnerable [37].
Insight into the situation
Having to face dementia is often accompanied by bouts of anger and the feeling that they have somehow been wronged [40]. Some other authors, however, report that people with dementia see their situation as an opportunity to mature and grow and that they think the disease may enable their soul to develop spiritually [23, 35]. Spiritual life is an integral part of an individual's life, and that holds true for people with dementia, and therefore the disease has a kind of sense for the person. Living a life in such a way gives rise to a new perspective regarding the situation at hand; the disease gives new meaning and sense to life, and therefore, life, or what remains of it, becomes worth living [23, 36].
Hope, love and compassion
In facing dementia, hope is one of the essential inner sources of power and the reflection of spiritual maturity of older people with dementia, according to numerous studies [23, 27, 33, 40]. Hope is the inner power that gives strength to the older person with dementia to cope with such a severe illness and the resulting situation [40]. At the same time, it helps an older person to accept the disease, recognise new opportunities for which many are also grateful [33, 40]. Hope is the expression of spirituality that offers older people with dementia security and a sense of safety that, despite their illness, the core of who they are will remain intact [23, 40]. Facing the disease can be an opportunity to develop a compassionate attitude towards oneself and the illness - that is spiritual development [23]. Often, older people with dementia become more loving and compassionate to others as well, as they want to help, be useful, serve someone or something, even if their contribution is small [39]. A kind and compassionate attitude, combined with humour, makes it easier for older people with dementia to deal with the disease [23]. Trevitt and MacKinlay (2006) [34] also find that compassion in connection with humour, even at the expense of their forgetfulness, facilitates more open communication between older people with dementia.
Thinking about death
Our results show that thinking about death is not related to being depressed. Older people with dementia can speak about death calmly and in a relaxed manner. Trevitt and MacKinlay (2006) [34] state that older people with dementia can speak openly about death, as they accept it as a normal process. Often, relatives, nursing staff and other people are those who avoid conversations about death. In addition to open talks about death, results show that older people with dementia are convinced that there is something inconceivable, great waiting for them at the end of life [23, 34].
Facing oneself
Negotiation with self was derived from descriptive themes of primary level; Loneliness; Loss of self and identity; Keeping contact with oneself.
Loneliness
Solitude, loneliness, and sadness are frequent companions of older people with dementia. Even those who live in nursing homes, despite having many opportunities for social contacts, miss family members and relatives who cannot be replaced [34, 37]. Memories of own loss from their early childhood, such as the loss of one's parents or siblings, are often accompanied by feelings of grief which surface daily. Therefore, older people with dementia feel lonely despite being surrounded by people [34]. Older people with dementia are often willing to share their feelings of solitude, grief, and loneliness with other people with dementia; however, often, they have no one to turn to, which deepens their sadness [35, 37].
Loss of self and identity
With the changed experience of oneself, there is a sense of loss that affects perception and experiencing as well as expressing spirituality in older people with dementia [23]. People with dementia become frustrated due to persistent memory problems since they can no longer rely on themselves, which makes them frustrated and makes them feel that they have lost their identity [23, 35]. The results show that dementia takes away people's dignity and degrades them, which leads to despair [23]. We also find that due to the changed perceptions of themselves, their interaction with the environment changes, which also causes various emotional responses, ranging from mild shocks and frustrations to deep feelings of sadness and anger [23]. On the contrary, researchers [36, 37] find that the sufferer does not change at the core and that they remain the same person.
Keeping contact with oneself
Phinney (2011) [36] reports that, despite all the losses, not being able to remember everything and losing some of their knowledge and, consequently, having problems with everyday activities, older people with dementia still feel much the same as they did before the onset of the illness. This is also why engaging with one's spirituality is essential [40], as in order to look at oneself, get in touch with one's thoughts, one has to take time, all of which significantly impacts their life [35]. Spiritual values are maintained despite their disease; however, the modes of expression change. It seems that spiritual values contribute to preserving identity throughout the progression of the disease [23, 35–37].
Spirituality as connectedness
Theme Spirituality as connectedness were developed from two secondary level descriptive themes: Connections with others; Connection with God.
Connections with others
Relationships with others include three descriptive primary−level themes: Friendships; Community and family, and Social isolation.
Friendships
The data analysis shows that joint activities with friends, conversations, relationships with friends, and socialising with them are the critical elements of the spirituality of older people with dementia [23, 35, 38, 39]. Meeting friends at, for instance, religious rituals, is, for some older people with dementia the only way to maintain social contact [38].
Community and family
In addition to friends, an essential reflection of spiritual life is the relationship and connection with family members and the community in which older elderly people with dementia live [23, 33, 39]. Relationships and fostering connections with important individuals, families and the community represent a source of incentive and joy for older people with dementia, which is why they are an essential reflection of spirituality [39]. Interpersonal relations within the family are necessary because of the sense of connection and belonging they evoke [33] and serve as support for older people in dealing with dementia, which is an essential element of spiritual expression [23].
Social isolation
Often, older people who experience dementia avoid social contacts because of the awareness of their cognitive decline, which can cause frustration and agitation [23, 39]. Sometimes, a complete break in social contacts can happen [23]. We also find a decrease in their social contacts, mainly due to their limited ability to maintain interpersonal relationships and to establish new relationships [40].
Connection with God
The connection with God is reflected in three descriptive primary−level themes, namely: Belonging; Deepening the relationship with God; Religion and religious rites.
Belonging
The importance of a sense of belonging to God and the church is emphasised by numerous studies [23, 27, 38, 39]. When going through difficult times, the connection to God is crucial as it helps overcome the fear of the future and provides a sense of security [39]. Participation in religious rites, such as singing at the Mass, gives older people with dementia a feeling that, despite their illness, they are worthy and still belong [27].
Deepening the relationship with God
Their relationship with God is more than something ethereal and abstract because God is their friend who is intimately involved in their daily life and is someone they can always connect with and turn to for support, advice, or a conversation. Some studies report that the disease intensified and deepened their connection to God [23, 39]. The bond with God deepens because they seek and find solace in it, as they are sure that it is always there somewhere, can be counted on and turned to when facing challenges with their memory. They often turn to God for help when they search for things or cannot remember something [33].
Religion and religious rites
Some rites, such as prayer, church visits or meditations can deepen the contact with God [23, 27, 34], which makes it possible for the older people with dementia to function normally [23, 34]. Faith is a constant that remains and deepens even in the face of the disease, or it appears because of it [23].