Epidemiological predictions suggest that dementia will continue to rise and that this will have social and economic ramifications. Effective interventions, beyond pharmacological management are needed. Psychosocial interventions have largely been investigated in relation to carers of people with dementia, or with regards to their ability to manage dementia symptoms, improve cognition, and reduce challenging behaviour. However, since dementia is a life-limiting illness and people with dementia are at risk of having their personhood compromised, psychosocial interventions should seek to enhance personhood, and offer the potential for the person to leave a legacy.

Methods

An integrative review was carried out to identify, assess, appraise and synthesise studies featuring interventions, which relate to both personhood and legacy. Search strategies were developed in key databases: MEDLINE; PsycINFO; Embase; Joanna Briggs Institute; CINAHL; Cochrane Database of Systematic Reviews; ASSIA. Grey literature was also identified through free-text searches. Psychosocial studies:Personhood and Patienthood Essay.

Results

Thirty six articles were included in the final review, these were tabulated and were assessed based on how the intervention related to personhood and legacy. Classification resulted in three themes being identified: Offering aspects of legacy; Acknowledging the person behind the patient; Facilitating meaningful engagement. Generally, personhood aspects of interventions were well reported, but further research is required to explore legacy potential of psychosocial interventions for people with dementia.

Conclusion

The integrative review provides an overview and exploration of an under-researched area, and provides directions for future research, which will help expand the evidence base and ultimately help improve patient care for people with dementia and their families.

Dementia affects almost 50 million people worldwide, manifesting as deterioration of cognitive functions, such as memory, thinking and behaviour (World Health Organisation/WHO). There are many types of dementia including vascular dementia, mild cognitive impairment and Alzheimer’s disease [1, 2]. Dementias have been identified as progressive, life-limiting illnesses resulting in complex needs [3], dementia can be a burden both socially, and economically, and has been regarded as a key health and public health priority [4, 5]. Epidemiological predictions suggest that dementia will continue to rise [3, 6, 7] with estimated figures suggesting that there will be 1.7 million people living with dementia in the UK by 2051 [8]. Therefore, social and economic ramifications can be expected to persist. This means that effective interventions and treatments, grounded in theoretical and empirical evidence bases, are required to manage dementias and reduce the social and economic burden for people. Dementia care and services have become more prominent on government agendas in recent years, with greater media coverage also capturing the public’s attention and awareness [9]. Psychosocial studies:Personhood and Patienthood Essay.

However, it is argued that care provision has failed to meet the complex needs affecting the growing proportion of people living with dementia [10]. It has been postulated that post-diagnostic support should be effective and holistic [4], focusing on enabling people with dementia to live well with their condition [11], and be committed to maintaining the person’s independence as much as possible, ultimately adhering to the ethos of person-centred care [8]. The pharmacological management of dementia has often involved addressing what the literature term “challenging behaviour” [12], with antipsychotic medication. This has had negative outcomes [10, 13]. Associated side effects of antipsychotic medications have been described as adverse [14] and particular medication has been found to be ineffective for certain aspects of dementia, such as agitation [12].

Therefore, there is increasing attention being given to incorporating non-pharmacological psychosocial interventions in dementia care [15–18], which can improve quality of life. These include life story work, reminiscence therapy, music therapy, approaches to interaction and communication, environmental modifications and reality orientation [8, 17]. The variety of psychosocial interventions that are available may help people with dementia to build coping strategies, reduce distress, provide interpersonal connections and optimise remaining abilities [18].

Previous systematic reviews of psychosocial interventions for people with dementia

Nevertheless, previous systematic reviews on psychosocial interventions for people with dementia have neglected to give specific attention to how they may enhance personhood and/or offer the person an opportunity to leave a legacy. The majority of reviews have focused primarily on psychosocial interventions for caregivers of those with dementia to support them in their caregiving activities and enhance their wellbeing, rather than looking at the person with dementia [19–24]. Psychosocial studies:Personhood and Patienthood Essay. Those which have addressed psychosocial interventions for people with dementia, have focused on the agenda to ameliorate symptoms [25–27], reduce challenging behaviours, (including agitation and wandering) [12, 28–32]; enable a reduction of medication [33], improve cognitive function [34, 35], or a combination of all of these [36]. Whilst important to the landscape of dementia research, such foci steers away from the areas this current review desires to investigate.

Lawrence and colleagues [37] explored psychosocial intervention benefits for people with dementia through qualitative evidence synthesis. This included identifying interventions’ ability to facilitate meaningful engagement and contributions. However, this work was mainly explored in the context of finding out how to best implement interventions into practice. Bates et al. [38] systematic review on psychosocial interventions for people with mild dementia identified reality orientation, procedural memory stimulation and counselling. Whilst the first two interventions were discussed in relation to their effect on mental health, the identified outcome measures for counselling were related to wellbeing. However, in addition to this only focusing on people with mild dementia, the review was conducted over a decade ago. In addition, Kasl-Godley and Gatz’s review [18] provided a useful overview of six different psychosocial interventions for people with dementia. The authors present both the theoretical background and empirical evidence of these interventions. The psychosocial interventions reviewed were psychodynamic approaches including psychotherapy; reminiscence and life review. The findings acknowledge that reminiscence allows interpersonal functions to be achieved such as leaving a legacy; support groups, recognising the applicability of these for the person with dementia as well as the people caring for them; reality orientation, which targets confusion amongst people with dementia; memory training, targeted at improving memory performance and memory functioning; and behavioural approaches, focusing on reducing what are perceived to be undesirable behaviour. No previous systematic reviews were found particularly concerned with life review.

Therefore, there is still sparse recent evidence offering specific focus on the aims we wish to address. We hypothesise that psychosocial interventions could do much more to promote personhood as well as serve a purpose of leaving a legacy of the person as they become more cognitively impaired. We argue that this should be focused on in evidence synthesis.Psychosocial studies:Personhood and Patienthood Essay.

Personhood and legacy

Person-centred care is endorsed as part of good health care practice and encompasses a holistic and personalised ethos, as well as, being part of conserving the dignity of the person [39–41]. Dignity-conserving care is highlighted as a necessary element of all health care and a responsibility for all healthcare professionals [39, 42]. The notion of “personhood” is inherently part of person-centredness [43], and is even more prominent in healthcare conditions involving dementia, which can challenge person-centredness [44]. Personhood denotes the elements of human beings that make them a person and is a status that is given by others, assuming recognition, respect and trust, [43–45]. Stein-Parbury et al. [46] argue that person-centred care for people with dementia is driven by the belief that it is possible to maintain personhood regardless of cognitive impairment. Furthermore, personhood is made up of personal, relational, existential and moral elements [47].

It is acknowledged that people with dementia may be at risk of having their personhood compromised [48]. Given this acknowledgment, this review will focus on identifying and appraising psychosocial interventions, which enhance personhood. Moreover, although not widely acknowledged, dementia is a life-limiting illness by nature of it significantly shortening the person’s life [49]. Thus, the review also seeks to explore the extent to which interventions offer the potential to allow the person to leave a legacy. The definition of legacy is:

1. 1.Law. a gift of property, especially personal property, as money, by will; a bequest.
2. 2.anything handed down from the past, as from an ancestor or predecessor [50].

The second definition informs our understanding of a legacy component to psychosocial interventions. Therefore, for the purposes of this review, leaving a legacy denotes situations in which the person with dementia can reveal and/or leave behind aspects of their personhood, for example their life story, identity, or insights into their former roles and achievements. With psychosocial interventions such as life story work, this results in a tangible object, such as a book [51] or memory box [52]. Since dementia can lead to erosion of personhood and aspects of identity being lost [47], psychosocial interventions which serve to facilitate and preserve personhood are welcomed.Psychosocial studies:Personhood and Patienthood Essay.  We postulate that the ability to leave a legacy can support enhancement of personhood. Therefore, interventions such as life story work involve reviewing a person’s past life and producing their individual biography [51]. This allows the personhood of the individual to be demonstrated and can give a sense of the ‘person behind the patient,’ this may involve making links between the person’s past and present [45]. This may help health and social care staff to respond more appropriately and sensitively to people’s needs, because they have a better-informed insight into the person.

An initial scoping stage navigating existing literature to help identify psychosocial interventions, ascertain their theoretical origins and empirical evidence-base, and assess their potential to help people with dementia symptoms retain and/or enhance their personhood, as well as, allow them to leave a legacy. The psychosocial interventions were identified through initial MEDLINE, Google Scholar and Google searches using the MeSH headings and free text terms around “psychosocial intervention”, “Dementia”, “Alzheimer’s Disease”, Mild Cognitive Impairment”, “Person-centred” and “Personhood” and appropriately combining them. Including “legacy” as a term was unsuccessful in returning articles featuring such psychosocial interventions. Therefore, consulting with experts (in person and via email) in the field was also necessary (in conjunction with searches) to help interventions of interest to be identified. These two methods allowed seven different “types” of psychosocial interventions to be identified all of which had clear theoretical origins. Biographical approaches included Life Story Work, Dignity Therapy, Reminiscence Therapy and personal profile documents, which all in some form or another apply narrative theory to healthcare. Each of these encourages individuals to reflect and disclose aspects of their life experiences [18, 53–55]. Doll therapy has its roots in a psychological approach linking to Bowlby’s [56] attachment theory and involves the person interacting with a doll or similar object [57].Psychosocial studies:Personhood and Patienthood Essay.  Also stemming from psychological origins is person-centred counselling, influenced by humanistic psychology. This intervention sees the person have sessions with a trained therapist who uses attentive listening and empathy to help the person resolve problems [58]. Finally, creative therapies, such as art, music and drama therapy were identified, these engage the person in creative activities and are underpinned by both psychology and the psychiatric approach of moral treatment [59].

These seven interventions were then considered more critically by two authors (BJ and MN) based on the extent to which they related to both personhood and legacy in the context of the person having a dementia condition. This was undertaken by further searching the theoretical and empirical evidence around them. The decision was made to discount person-centred counselling, since the legacy potential could not clearly be established. Therefore, the search strategy was developed around the six remaining psychosocial interventions.

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Aims and objectives

The integrative review identifies, appraises, selects and synthesises existing research on psychosocial interventions for people diagnosed with dementia. Specifically, it seeks to address the following questions:

• What is the evidence for effective psychosocial interventions used for people with dementia, which enhance their personhood and offers the potential for them to leave a legacy?
• What recommendations can be made for clinical practice?

Furthermore, the review was guided by the following aims:

1. 1.To identify, select, appraise and synthesise available evidence regarding psychosocial interventions for people with dementia, which enhance personhood and allow the person to leave a legacy.
2. 2.To compare and contrast the different psychosocial interventions based on their ability to enhance personhood and allow the person to leave a legacy.
3. 3.To make health and social care recommendations regarding psychosocial interventions relating to legacy and enhancement of personhood for people with dementia. Psychosocial studies:Personhood and Patienthood Essay.
4. 4.To outline future research avenues to expand the evidence base regarding psychosocial interventions relating to legacy, which enhance personhood for people with dementia.

Ethics

Since this was a literature review no ethical permissions or informed consent were needed. Any supporting data related to the review, not in the article can be obtained from the corresponding author.

Search of the literature

Dementia symptoms were taken to include the different types of dementia conditions identified by UK charity Alzheimer’s Society, such as Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, and mild cognitive impairment. In the identification stage, psychosocial interventions were chosen based on their potential to enhance personhood of the individual with the condition and allow them to leave a legacy. Psychosocial studies:Personhood and Patienthood Essay.