Living with dementia

Living with a dementia condition will, for most persons, lead to an experience of gradually losing functions over a wide spectre of areas. The exploration of how persons living with dementia experience and perceive their own life situation has been a growing field of research. In a systematic review on ‘suffering’ from dementia, de Boer et al. (2007) states that the literature in this field ‘gives no solid

support to the widespread assumption that dementia is necessarily a state of dreadful suffering’ (p.1033). Instead, these kinds of studies provide valuable insight into the complexity and heterogeneity in experiences of living with dementia, stretching beyond assessments of what the persons can or cannot do.

Table 2 is a survey of meta-syntheses based on articles where qualitative interviews with persons with dementia is used as the main empirical data. The literature reveals a large degree of heterogeneity in the experiences, but some common aspects can be identified. Living with and adapting to change is a common focus in studies exploring aspects concerning life with dementia (Bjorklof et al., 2019; Conway et al., 2018;

Eriksen et al., 2016; Gorska et al., 2018; Hennelly et al., 2019). Wogn-Henriksen (2012) revealed how persons with dementia use a wide register of individual, dynamic and flexible strategies to cope with dementia related challenges. It has also been shown how persons with dementia, despite severe losses in life, express feelings of happiness, love and warm relationships (von Kutzleben et al., 2012). O’Rourke et al. (2015) illustrates this double-sidedness by dividing the concepts they identify into positive and negative aspects, such as experiencing purpose versus aimlessness or being well versus being ill. As an example, participating in social activities and being part of a fellowship, might be a source for experiencing community and being confirmed as a person. On the other hand, it might be an arena where cognitive impairment becomes pronounced, strengthening the sensation of being ‘demented’

and different from the others (Bjorklof et al., 2019; Daly et al., 2019; O'Rourke et al., 2015).

Table 2 – Metasyntheses exploring experiences of living with dementia Author/Year/ CountryTheme Inclusion/exclusion criteria

No. of articles Main findings (Bjorklof et al., 2019) Norway

Coping in dementia

Incl: Only persons with dementia included, clearly described voice of person with dementia, experiences of coping Excl.: Uncertainty in diagnose, mixed sample with other diagnoses, studies of specific interventions

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•The persons experience a threat towards their identity, due to stigma, loss of social contact etc. •They use humor and social and emotional support to cope as well as strategies to holding on to life as usual; oadapting and adjusting; oaccepting the situation; oand avoiding the situation. •Latent theme: balancing the struggle of living with dementia (Daly et al. 2019) Ireland

Experience of spirituality in dementia Incl.: Participants with a diagnosis of dementia, exploring spirituality in dementia Excl.: Other diagnoses, other persons included (relatives, professionals, etc.)

8

•Maintaining spiritual practices, either through religious activities, arts, music, nature or social interaction might serv a resource to maintain personhood, meaning and hope. •Challenges in social interaction within a community might prevent this resource. (Eriksen et al., 2016) Norway

Experience of relations in dementia

Incl.: sample of persons with dementia only, persons’ with dementia voice made explicit, describing relations with other persons Excl.: Mixed sample, uncertainty due to dementia, studies of a certain intervention

63

The persons experience a change in relations in terms of: •being disconnected, •being dependent, •being a burden, •being treated in paternalistic ways. •They find meaning through supportive relations with meanin others. Being with other persons with dementia is also foun be supportive (Forsund et al., 2018) Norway

Experience of lived space in dementia Incl.: only persons with dementia, explicit voice of persons with dementia, experiences of lived space Excl.: Mixed sample, uncertainty on diagnose, studies of specific interventions

45

•Latent theme: “Living with dementia is similar to living in a space where the walls keep closing in.” •The lived experience was related to the four categories: belonging; meaningfulness; safety and security; and autonomy •Living at home might both be supportive towards these categories, or lead to decline. •Nursing home admission might strengthen the experience o these categories or lead to further loss.

24 (Gorska et al. 2018) Scotland Lived experience in dementia Incl.: Majority of participants living in community –≥ 65 years, dementia diagnosis, living with dementia as main focus Excl.: Participants <65 years, inclusion of other diagnostic groups, majority living in residential care

34

•Changes in awareness and memory function impactful on liv experience. •Conflicting emotions, reduced participation, loss of social contact and loss of autonomy were also frequent. •Losses poses a threat to identity. The persons’ strive for continuity by using emotional strategies, adapt to new situati and compensate for lost functions. •The environment has a double-edged role in this regard, as it strengthen or weaken the persons’ coping strategies. (O'Rourke et al. 2015) Canada

Factors that affect quality of life in dementia Incl.: primary purpose to identify factors affecting quality of life in dementia Excl.: persons with dementia not included, perspective of persons with dementia not differentiated from that of family members

11

Six concepts were identified. The first was represented also in number Concepts 2-6 all represent a dichotomy that may affect quality of life positively or negatively: •1) Connectedness •2) Relationships (together vs alone) •3) Agency in life today (purposeful vs aimless) •4) Wellness (well vs ill) •5) Sense of place (located vs unsettled) •6) Happiness and sadness (Wadham et al. 2016) England

Couples shared experience of dementia Incl.: Persons with dementia and partners as participants, both view synthesised in findings, focus on impact of dementia on couple dynamics Excl.: both parts not active, other dyads than couples or other diagnoses than dementia without being distinguished, studies of specific interventions

10

Four inter-related themes were identified: •Togetherness: continuing as ‘we’ are – an ideal, under threat from the progression of dementia; •Upsetting and re-defining the balance: a new ‘normal’ is evolving – shift of balance within the relationship; •Sensitive attunement: shielding one’s partner from the effects o dementia – this theme was two-way within the couples; •Resilience: distancing distress while cherishing life and the present moment –continuum from hopelessness to acceptance

In general, the importance of relationships and how relationships may affect the persons’ experience of life with dementia, positively or negatively, is a repeated finding within the literature. Other persons, whether it is close relatives or healthcare personnel, might be sources for experiencing belonging, dignity and respect,

strengthening what resources the person has left, helping them retain their identity, and give adequate support where function is decreased. Conversely, they might make the person feel like a burden, dependent on help from others, disconnected from society or even life (Eriksen et al., 2016; Gorska et al., 2018; O'Rourke et al., 2015).

In the prolongation of this issue, we find a repeated emphasis on the importance of being respected as a human being and of retaining autonomy and independence, aspects that are repeatedly found to be important for this group, but also, repeatedly found to be violated (Cahill, 2018; Gorska et al., 2018; Hedman et al., 2016; Smebye et al., 2016; Tranvag et al., 2016).