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Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence

  • Kathryn Lord
  • Jules Beresford-Dent
  • Penny Rapaport
  • Alex Burton
  • Monica Leverton
  • Kate Walters
  • Iain Lang
  • Murna Downs
  • Jill Manthorpe
  • Sue Boex
  • Joy Jackson
  • Margaret Ogden
  • Claudia CooperEmail author
Open Access
Invited Reviews

Abstract

Purpose

To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home.

Methods

We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base.

Results

Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumer-directed and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model.

Conclusions

Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home.

Trial registration

PROSPERO 2018 registration number: CRD42018099693 (scoping review).

PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).

Keywords

Dementia Home care Theoretical models 

Introduction

Around 46.8 million people worldwide have dementia, and this is expected to increase to 131.5 million by 2050 [1]. Two-thirds of people diagnosed with dementia live in their own homes [2] and most want to continue to do so, as independently as possible [3]. Remaining at home benefits the individual with dementia, through greater quality of life, and society, by reducing costs of care [2]. It is unclear which care models enable this most effectively and equitably, and promote development of the “Dementia friendly, dementia capable, and dementia positive” services and communities, to which most developed countries aspire [4, 5]. Good quality community care should be accessible to all people living with dementia. Hospitalisation or nursing home admission of people with dementia may reflect inequities in availability of community care. Risks of care breakdown and hospitalisation are high in people living with dementia [6], especially for people with greater cognitive, functioning and behavioural care needs; and who are cared for by family carers reporting high stress levels [7]. Living well with dementia has been conceptualised as living with quality of life, choice, autonomy, dignity and as independently as possible. There can be a tension between independence as an expression of full autonomy [8] and the interdependence that can enable people with dementia to live in their own homes for longer [9].

To inform future interventions and selection of outcome measures to evaluate them, we aimed to build a theory and evidence-based model to explain how people living with dementia can be supported to live as full a life as possible at home. To inform our model, we: (a) scoped literature for existing theoretical models of how to enable people with dementia to live at home more independently, with good life quality or for longer; and (b) systematically reviewed Randomised Controlled Trials (RCTs) to identify psychosocial interventions that effectively extended time lived with dementia outside 24 h care settings. Experts by experience, clinical or academic knowledge used this evidence to develop a new theoretical model.

Methods

Search strategies and selection criteria

We undertook searches in August 2018, without limits to language or publication date. We registered reviews (PROSPERO: CRD42018099693/9200).

Scoping review of theoretical models

We used standard scoping review methodology [10]. Inclusion criteria were broad, encompassing: studies, reviews, reports and chapters describing a theoretical or conceptual model, developed from expert consensus, sociological theory or primary research. We included models that explained how people can live well with dementia in their own homes, with greater independence, life quality or for longer. JBD searched Medline/PubMed and OVID. Search terms related to dementia (dementia, Alzheimer’s, memory loss, memory disorder, cognitive impairment), community (community care, community residing, home, private dwelling, sheltered housing), independence (autonomy, freedom, self determination, independent, living well, quality of life) and theories/models and concepts (theory, theoret*, model, concept). CC removed duplicates, screened electronic search results, hand searched included papers’ references, and searched careinfo.org, and google scholar using similar terms. CC also search the journal Dementia: the international journal of social science research as a volume of particular relevance to the topic, that has published many papers describing theoretical models underpinning dementia care delivery.

KL and CC read papers independently to identify models. An expert reference group (comprising CC, AB, PR, IL, SB, MO, JJ, ML (authors), an occupational therapist and memory service manager) reviewed preliminary results and suggested areas for further scoping: compassion and empathy. A further PubMed search using these terms and dementia yielded two additional papers.

Systematic review of RCTs

KL searched PubMed, Embase and PsycINFO using keywords: Dementia OR cognitive impairment AND home or community AND time OR length; filtering results to include Randomised Controlled Trials (RCTs) only; hand searched included papers’ references and searched clinicaltrialsregiater.eu. We included RCTs evaluating non-pharmacological interventions reporting time a person with dementia lived at home as a primary or secondary outcome. We excluded studies if any participants lived in 24-h care at baseline; and conference abstracts.

We resolved uncertainties regarding study inclusion through discussion. We contacted experts to enquire about additional published or unpublished work. A second author crosschecked one tenth of abstracts from the original searches, and did not identify any additional eligible papers. KL and CC extracted data. We narratively synthesised findings. We did not formally assess publication bias as our study aims did not warrant this.

Quality appraisal

In line with the selected methodological approach, we did not formally evaluate study quality in our scoping review; but we recorded level of evidence (Table 1) [10]. For our systematic review of RCTs, KL and CC appraised study risk of bias independently, using an operationalized checklist developed by our group [11, 12]. Each checklist item scored one point, so five was the highest possible quality score. KL and CC discussed discrepancies to reach consensus. The authors decided a priori the checklist items that should be endorsed to define a study as lower risk of bias (denoted by * below):
Table 1

Results of scoping review of publications proposing theoretical or conceptual models describing how people with dementia can be supported to live well or longer at home; showing model components identified and level of evidence

Study

Country

Models proposed

Level of evidence

Values/approaches

Strategies

Service models

 

Amella et al. [43]

USA

 

3P’s social ecological model

 

Case studies

Banerjee et al. [50, 51]

UK

Person-centred care

Identify needs, carer support, early intervention

Case management

Service evaluation

Beck et al. [44]

USA

 

Occupational therapy models

 

Expert opinion

Behuniak [21]

USA

Political model

  

Expert opinion

Brooker [16]

UK

VIPS framework

  

Expert opinion

Brodaty et al. [36]

Australia

 

Carer-focussed strategies

 

Randomised controlled trial

Bunn et al. [39]

UK

 

Carer-focussed strategies

 

Systematic literature review

Cabin [48]

USA

  

Palliative care model

Expert opinion

Cahill [23]

UK

Rights-based care

  

Expert opinion

Callahan et al., Boustani et al., Callahan et al. [33, 67, 68]

USA

Person-centred care

 

Collaborative care

RCT and Implementation study

Caron et al. [34]

Canada

Carer proxy decisions

  

Qualitative study

Chung et al. [17]

UK

Agency and personhood

  

Qualitative study

Daley et al. [26]

UK

Recovery focused model

  

Qualitative study

Downs and Lord [13]

UK

Person-centred care

  

Expert opinion

Evans et al. [60]

UK

 

Increasing activities

Supporting people funding scheme

Expert opinion

Gaugler et al. [40]

USA

 

Identify/prioritise unmet needs

 

Longitudinal quantitative study

Goeman et al. [54]

Australia

  

Case management

Systematic literature review

Graff [45]

Netherlands

Optimising environment

Goal-setting, carer skills

 

Case study

Gresham et al. [37]

Australia

 

Carer-focussed strategies

 

Longitudinal quantitative study

Hoppes et al. [30]

USA

Ecological theory

  

Pilot quantitative study

Hurley et al. [35]

UK

Home safety/Injury model

  

Qualitative study

Khanassov et al. [55]

Canada

  

Case management

Systematic literature review

Kohler et al. [59]

Germany

Person-centred care

Self-management, carer support, early intervention

Collaborative care

Randomised controlled trial

Kolanowski et al. [32]

USA

Theories of neuroplasticity

  

Evidence review

Kontos [19]

Canada

Phenomenological model

  

Expert opinion

Kovach [31]

USA

Sensoristasis & imbalance

  

Evidence review/expert opinion

Laakkonen et al. [46]

Finland

Self-management

  

Randomised controlled trial

Lin & Lewis [4]

USA

Dementia friendly communities

  

Narrative literature review

Livingston [38]

UK

 

Carer-focussed strategies

 

Randomised controlled trial

Low and Fletcher [58]

Australia

  

Integrated/consumer-directed care

Narrative literature review

MacNeil Vroomen et al. [56]

Netherlands

  

Case management

Cohort study

Manthorpe et al. [8]

UK

Rights-based care

  

Expert opinion

Martin et al. [47]

UK

 

Self-management

 

Qualitative, conceptual study

McIntyre [15]

Canada

Person-centred care

  

Case studies/expert opinion

Menne et al. [28]

UK

Continuity theory

  

Qualitative interviews

Perkins et al. [27]

UK

Recovery focused model

  

Briefing paper

Reilly et al. [52]

UK

  

Case management

Systematic review

Renehan et al. [53]

Australia

Relationship centred, enablement, holistic, accessible

  

Systematic review and qualitative

Rothera et al. [14]

UK

Person-centred care

  

Qualitative implementation study

Samus et al., Black et al. [49, 69]

USA

Person-centred care

Systematically identify needs, carer support

Case management

Quantitative study & Pilot randomised controlled trial

Schölzel-Dorenbos et al. [41]

Netherlands

 

Needs-based care

 

Narrative literature review

Smebye et al. [24]

Norway

Theories of autonomy

  

Qualitative case study

Smebye & Kirkevold [18]

Norway

Relationship focussed care

  

Qualitative study

Thyrian et al. [53]

Germany

Person-centred care

 

Case management

Randomised controlled trial

Tranvag et al. [22]

Norway

Dignity-preserving care

  

Meta-synthesis

Woodbridge et al. [29]

UK

Press-competence model

  

Systematic literature review

Woods [9]

UK

Concept: excess disability

  

Expert opinion

Zwijsen et al. [20]

Netherlands

Theories of autonomy

  

Systematic literature review

  1. (1)

    Were participants appropriately allocated to intervention and control groups? (Was randomisation independent?)*

     
  2. (2)

    Were patients and clinicians, as far as possible, ‘masked’ to treatment allocation?

     
  3. (3)

    Were patients who entered the trial accounted for and intention-to-treat analyses used?*

     
  4. (4)

    Were all participants followed up and data collected in the same way?*

     
  5. (5)

    Was there a power calculation, based on our outcome of interest?

     

We followed PRISMA guidelines when reporting the review.

Model development

CC presented emerging evidence and an initial model draft to the expert reference group. The group considered evidence emerging from the two reviews to decide which components were included in the model. The group agreed the final model at a face to face meeting in September 2018, and although we held a subsequent period of consultation through email discussions, no further changes were suggested by the group or made after this meeting.

Results

Theoretical models scoping review

We included 52 studies (Fig. 1 shows search results). We list the models identified in Table 1 and described them below. We divided the identified models into (1) values and approaches; (2) strategies for delivering care, and (3) service models for delivering dementia care.
Fig. 1

PRISMA Flow Diagram for literature review of theoretical and explanatory models of how people with dementia can be supported to live well independently

Values and approaches

These model components were reported in qualitative studies, evidence syntheses of predominantly qualitative studies, and expert opinion publications.

Relational and recovery models

Kitwood is credited with introducing the biopsychosocial model of dementia care: now widely accepted, this posits that functioning in people living with dementia is not solely related to biological illness factors, but also their psychosocial environment [13]. His theory of person-centred care [14, 15, 16] argued that personhood, quality of life and well-being are a function of the quality of people’s interactions and relationships. He described malignant social psychology (also termed malignant positioning by others), to refer to interactions that diminish a person’s sense of belonging, personhood and self-worth. Person-centred care describes an individualised, humanistic care approach that promotes agency, choice and partnership in decision-making. Care consistent with this approach gives unconditional positive regard; facilitates a sense of worth; is risk tolerant; maintains the continuity of a person’s identity; and provides opportunity for meaningful engagement and occupation. It is operationalised in the VIPS Framework (absolute Value of human lives; Individualised care; understanding the world from the Perspective of service users; Social environment that supports psychological needs) [16, 17].

Relationship-focussed care extends personhood theory to include inter-relatedness in caring relationships: mutuality and reciprocity [18]. Kontos’ phenomenological model understands agency in people living with dementia as emanating from body (primordial and sociocultural characteristics residing below the threshold of cognition) as well as mind. It posits that people with dementia require respect as on-going although changed persons, who retain a sense of self and can form trusting relationships [19].

Rights-based models advocate for empowerment and engagement of people with dementia in dementia care [13]. Some political theories propose the need to accept the realities of interdependence in dementia care [20, 21], and balance rights to autonomy, protection and good care [22, 23]. There may be trade-offs, for example between reduced privacy from technological surveillance and its potential to enable continued relative autonomy and attenuate risks of harm [24]. Advocating the person with dementia’s autonomy and integrity is described as the foundation of dignity-preserving dementia care [25].

Recovery-focussed models in dementia conceptualise recovery as a journey that involves accommodating to diagnosis [26, 27]. Continuity with pre-existing identity, networks, roles and activities can enable recovery. Taking personal responsibility is helpful to people living with dementia where possible; as dementia severity increases, there is a greater role for carers in supporting continuity with pre-existing identity. Menne et al. [28], in reporting findings from qualitative interviews with people living with early dementia, found that a desire to maintain continuity with previous ways of life emerged from narratives. They situated their findings in continuity theory.

Environmental and activity models

Functional decline is influenced by the social and caregiving environment, which can induce or maintain “excess disability”: for example, inactivity, boredom, and social withdrawal can compromise functioning [9]. Modifying the home environment can help maintain an individual’s ‘maximum performance potential’ [29, 30]. Modifying the wider environment can promote Dementia-friendly communities [4]. Pacing activities optimally and matching sensory-stimulating and sensory-calming activities to the person with dementia’s needs may prevent intrapsychic discomfort, agitation, and associated functional decline [31]. Physical activity and exercise may also stimulate neuroplasticity and increase cognitive reserve [32]. Callahan suggests these mechanisms are important in a restorative model of care [33].

Family carer-focussed models

Family carer proxy decision-making regarding place of residence directly influences how long people live with dementia at home. Care recipient factors (degree of autonomy, dementia severity and capacity), context and care (support, environment and crises); family carer factors (other obligations, health, role meaning, emotions and help-seeking attitudes) determine their perceived ability to provide care, which they balance against anticipated consequences of moves to long-term care [34]. Carer self-efficacy, practical ability, values, traditions and resources will also influence their decisions that balance risks and benefits of people with dementia staying at home for longer [35].

Strategies for delivering care

There is at least one Randomised Controlled Trial (RCT) supporting efficacy of each of these broad categories.

Family carer-focussed interventions

Have reduced carer burden and increased time lived at home by care recipients [36, 37, 38], probably because carers who are less stressed and burdened are more able to continue in supporting roles. UK Admiral Nursing Services work specifically with dementia family carers in some localities, but service content depends on local requirements and commissioning [39].

Needs and goals-based care

Numerous models focus on identifying and prioritising needs, and/or setting goals to address them. People with dementia with fewer unmet needs live longer at home [40]. The Need-driven, Dementia-compromised Behaviour theory describes how unmet needs can lead to behaviours that challenge, increase carer burden, decrease life quality, and care breakdown. Scholzel-Dorenbos considered how needs might be prioritised, based on their likely impact on quality of life [41]. Goal Attainment Scaling is a method for identifying the unmet need with highest priority and setting goals to address it [42].

Other models guide responses to behavioural or functional needs, e.g. the 3P’s model to change behaviour by considering “the Person, People (who are caring) and Place (environment)” [43]; and a framework to address functional needs, through strategies including stimulus control, verbal and physical prompts, modelling, and physical guidance [44]. In a case study, Graff described an Occupational Therapy (OT) treatment model in dementia combining education, goal-setting, environment adaptation, skills training for people with dementia or family carers, and addressing dysfunctional cognitions about patient behaviour and carer role [45].

Self-management models

Position professionals as partners rather than experts and seek to enable self-efficacy in problem-solving [46, 47]. Beneficial effects on spousal quality of life and cognitive function of people with dementia have been reported [46].

Dementia care service models

Cabin contrasted medical and palliative care models that assume treatment is not curative. These include respite care, pastoral care, and volunteer services. Focus is on symptom management and quality of life [48].

Dementia case management (collaborative care/care coordination)

In this service model, people living with dementia are allocated a care manager to coordinate care, facilitate collaboration between services and usually deliver care [49, 50, 51, 52, 53]. Dementia case management interventions have been associated with greater benefits for patient and carers if they are: for 6 months or more; multi-disciplinary, inter-professional, and delivered by a case worker with a skilled background (e.g. clinical or trained in dementia care) [54]. It may be more successful when more intensive (up to 50 clients per fulltime worker), with proactive and timely follow-up [55, 56]. It should deliver relationship-based, holistic, enabling and accessible care [57]. The UK memory service model has a particular focus on early diagnosis and intervention; some memory services deliver case management, while many offer assessment and medication review [50, 51].

Integrated care models

Aim to create connectivity, alignment and collaboration within services at funding, administrative or provider levels. This is different to, but may facilitate, case management approaches, where a case manager seeks to provide clients with integrated care by liaising with different services on their behalf. These approaches have been associated with fewer hospital days, and increased service use, but not life quality [58, 59]. The UK Supporting People programme funded local authority-employed activity coordinators to support people with dementia living in their own homes to increase pleasant activities. By working across extra-care sheltered and private accommodation, that sought to promote community integration [60].

Consumer-directed care models

Also termed personal budgets or direct payments in the English context, in these models the person living with dementia, or their proxy, decides which services or support to purchase. They increase service usage, satisfaction and costs in certain circumstances [58].

Systematic review of RCTs

Figure 2 shows our search results. We included 11 studies, all of which were rated as higher quality. Table 2 describes study characteristics and findings for included studies. We describe below the three studies (describing two interventions) that significantly increased time for people with dementia living at home.
Fig. 2

PRISMA Flow Diagram for systematic review of RCT evidence of interventions to enable people with dementia to live longer in their own homes

Table 2

Results of systematic review of Randomised control trials in which time lived at home was reported as an outcome

Author, (Country)

Participants

N

Intervention

Effect on institutionalisation

Quality rating

1

2

3

4

5

Intervention

Control

Eloniemi-Sulkava et al. [70] (Finland)

Person with dementia: Family carer dyads

53

47

Family care coordinator

After 2 years, 17 intervention patients (32%) and 14 control patients (30%) were in care home (P = 0.80).

X

X

Eloniemi-Sulkava et al. [71] (Finland)

Person with dementia: spouse dyads

63

62

Family care coordinator, a geriatrician, carer support groups and individualized services

2-year adjusted hazard ratio for admission to care home in intervention group was 0.53 (P = 0.12).

X

X

Gaugler et al., [72] (USA)

Adult–child carers

54

53

Carer and Family counselling (see text)

Intervention participants were significantly less likely (P < 0.05) to admit their parents to a residential care setting and delayed their parents’ time to admission significantly longer (228.36 days longer on average) than those in the control group.

X

Joling et al., [73] (Netherlands)

Person with dementia: Family carer dyads

96

96

Family counselling

No sig difference in time until institutionalisation (23/96 intervention vs 18/96 usual care).

Kurz et al., [74] (Germany, Austria, Switzerland)

Family carers

156

136

Educational, family carer intervention

No significant difference between groups in rates of institutionalisation to nursing home (34 intervention vs 23 control permanent institutionalisations)

Menn et al., [75] (Germany)

Person with dementia: Family carer dyads

109

110

171

general practitioners’ training in dementia care and (1) recommendation of support groups and (2) actively approaching caregiver counseling

No differences between the three study groups (associated P value based on a log-rank test of 0.31 after 2 years and 0.74 after 4 years).

X

X

Mittelman et al., [61] (USA)

 

103

103

Carer and Family counselling (see text)

Median time from baseline to NH placement of AD patients was 329 days longer in treatment vs control.

X

X

Mittelman et al., [62] (USA)

Person with dementia: spousal dyads

203

203

Family carers as primary focus of intervention: Family counselling

Patients whose spouses received the intervention experienced a 28.3% reduction in the rate of nursing home placement compared with usual care controls; difference in model-predicted median time to placement was 557 days.

X

Nobili et al., [76] (Italy)

 

35

34

Family carers as primary focus of intervention: Family counselling

At 12 m follow-up, 4 PLWD from each group were institutionalised.

X

X

Samus et al., [49] (USA)

Person with dementia: Family carer dyads

110

193

Dementia case management

The adjusted hazard of leaving the home was decreased by 37% (Hazard ratio: 0.63, 95% Confidence Interval: 0.42–0.94) compared with control participants. Intervention had estimated mean delay to transition out of home of 51 days, with a median delay of 288 days over an extended follow-up period (26 m) compared with control.

X

Teri et al., [77] (USA)

Person with dementia: Family carer dyads

76

77

Family carer and exercise intervention

No significant difference in rates of institutionalisation between groups

X*

PLWD Person living with dementia, MCI Mild cognitive impairment

*Power calculation not based on our outcomes of interest

The Maximizing Independence at Home (MIND) intervention delivers person-centred care with elements from all the “values and approaches” domains in our draft model: there is a focus on optimising environment and supporting family carers. Care is needs- and goal-based; needs are identified and mapped to a menu of care strategies including self-management strategies, carer-focussed strategies, and referral and linkage to resources/services. An interventionist takes a coordination role consistent with dementia case management. Relative to participants receiving the control intervention, intervention participants were less likely to permanently leave their home or die over 18 months and remained at home for longer (mean difference: 51 days) [49]. Benefits were sustained over 26 months: intervention participants were less likely to transition from home and remained at home longer than control participants (median difference: 288 days).

The New York University Spouse Caregiver Intervention (NYUCI) comprises two individual and four family counselling sessions tailored to each carer’s specific situation, encouragement of weekly support group participation and ad hoc telephone counselling. Counselling session content was determined by the needs of each caregiver and their family and could include behavioural management and improving family communication. The person with dementia did not attend sessions [61, 62]. Intervention content maps to relational and recovery and family carer-focussed approaches and, because content was flexible, it was possible that other domains were covered. Care strategies used were needs-based and family carer-focussed. There was an element of dementia case management through availability of ad hoc, post-intervention support for carers. Intervention group care recipients stayed at home longer, relative to the control group. The median difference in time to nursing home placement was 557 days [61, 62].

Gaugler adapted the NYUCI intervention for adult–child carers of people living with dementia [63] and reported that control-group care recipients were more likely to enter an assisted living or residential care setting than those in the treatment group. Caregivers in the intervention condition were significantly more likely to delay residential care placement of parents compared with controls. The mean time from baseline to residential care admission for parents of adult children in the intervention condition was 972 days, compared with 743 days in the control group.

Expert consultation and Model development

CC synthesised evidence from reviews and the expert reference group to develop a theoretical model of independence at home for people living with dementia, which was then agreed and finalised in consultation with co-authors. Figure 3 shows the final model. This includes the ten values and approaches that should underpin support for people living with dementia: (1) Care should be compassionate and be centred around the person living with dementia, their important relationships and family carers. (2) Care decisions and strategies should balance often conflicting needs to consider both the autonomy and the safety of the person living with dementia. Calculated risks can allow more freedom and independence. [3] A focus on continued connections with earlier social networks and roles is important, as these are part of a person’s identity. (4) The home and wider environment should be as dementia-friendly as possible. (5) Activities and plans should be tailored to the individual.
Fig. 3

NIDUS theoretical model of independence at home

The care strategies that these values and approaches inform should be: [6] developed around the needs and goals of the person living with dementia and their family carers. [7] Psychological and occupational therapy strategies used to reduce disability from behavioural or functional impairments as far as possible and [8] self-management should be supported and. These care strategies should be delivered within a service: [9] for which family carers and people with dementia have a single point of contact. This could, for example be a case manager or General Practitioner; and that provides consistent, joined up care.

Discussion

The new model is theoretically informed, aligned with RCT evidence, and has been shaped by personal, clinical and academic perspectives. It incorporates the values and approaches integral to good quality dementia care as well as care strategies and service models likely to deliver these. People living with dementia and family carers are at the centre of our model. Their wellbeing, rights, dignity, needs and goals should inform what care is delivered and how. Care needs to be accessible; family carers and people with dementia need a clear point of contact to support them in managing needs as they arise. This point of contact can monitor the care delivered, ensuring it conforms to the values and approaches that support people to live well with dementia. Our model proposes that the home and wider community should be dementia friendly, and thus extends beyond the realm of clinical to social and community interventions.

Two interventions successfully increased time people with dementia lived at home: the Maximizing Independence at Home (MIND) and New York University Spouse Caregiver Interventions. We explored how the components of these interventions mapped onto our emerging theoretical model. These collectively encompassed the core values included in our final model. The similarities between findings from our theory-based and RCT-based review, and expert opinion supports face validity to our model.

Our model focuses on how people are supported to live well with dementia in their own homes. Essentially, we have developed a model of quality of care at home, though findings resonate with literature on quality of life in dementia and of the subjective experience of living well with dementia. Models of quality of life additionally include life events and challenges. Interestingly, in the IDEAL study, the largest study to date of living well with dementia, domains of psychological characteristics and psychological health (e.g., personality, optimism, loneliness, depression) most strongly predicted measures of living well.

Limitations

Our model was developed from a synthesis of theoretical models with a range of foci often with poorly defined constructs: living well, with life quality, with better functioning or longer at home. Our scoping review was deliberately broad and not all components included have a strong evidence base. For some model components, such as person-centred care, we find it hard to envisage how their efficacy in improving the lives of people living at home with dementia could be directly, ethically and empirically tested. For others there was equivocal evidence. A Cochrane review of care management interventions in dementia found heterogeneity in interventions and equivocal results, with some indication of delay to care home placement over 18 months [52]. Two care models (consumer-led and integrated-care models) that we identified in our theoretical review were not included in the final model because there was a lack of evidence that they were directly associated with good quality care, though they may facilitate it.

We did not include models explaining how family carers of people with dementia cope and can be supported, for example the stress health process framework [64], unless they directly addressed how and whether people with dementia were able to live well and for longer at home. Other work was excluded because it did not specifically consider dementia. For example, we reported limited evidence for restorative models of home care in dementia as most trials exclude people living with dementia [65].

We only systematically reviewed RCTs regarding the outcome of time lived at home. This is an indicator of living well at home, but quality of the lived experience is important too. We did not meta-analyse outcomes due to heterogeneity of populations and outcomes and because our purpose was to identify effective interventions to inform development of our model. Of all the included studies in our RCT systematic review, only the MIND RCT included a racially diverse population (29% non-white). People from Black and minority ethnic backgrounds tend to access services less and are less likely to move to a care home [66], so there may be cultural differences in optimal models of home support.

Conclusions

Our theoretical model describes values, care strategies and service models that can be used in the design of future interventions to enable people with dementia to live well and for longer at home.

Notes

Funding

This work forms the first phase of the NIDUS (New Interventions in Dementia Study), which is hosted within the Alzheimer’s Society Centre of Excellence for Independence at home (Centre of Excellence grant 330).

Compliance with ethical standards

Conflict of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

References

  1. 1.
    Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP (2013) The global prevalence of dementia: a systematic review and metaanalysis. Alzheimer’s Dement 9(1):63–75CrossRefGoogle Scholar
  2. 2.
    Prince M, Knapp M, Guerchet M, McCrone P, Prina M, Comas-Herrera A et al (2014) Dementia UK: update. Alzheimer’s Society, LondonGoogle Scholar
  3. 3.
    Lord K, Livingston G, Robertson S, Cooper C (2016) How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study. BMC Geriatr 16(1):68PubMedPubMedCentralCrossRefGoogle Scholar
  4. 4.
    Lin SY, Lewis FM (2015) Dementia friendly, dementia capable, and dementia positive: concepts to prepare for the future. Gerontologist 55(2):237–244PubMedPubMedCentralCrossRefGoogle Scholar
  5. 5.
    Office PM (2015) Prime Minister’s challenge on dementia 2020. English Government, LondonGoogle Scholar
  6. 6.
    Camberg LC, Smith NE, Beaudet M, Daley J, Cagan M, Thibault G (1997) Discharge destination and repeat hospitalizations. Med Care 35(8):756–767PubMedCrossRefPubMedCentralGoogle Scholar
  7. 7.
    Gaugler JE, Yu F, Krichbaum K, Wyman JF (2009) Predictors of nursing home admission for persons with dementia. Med Care 47(2):191–198PubMedCrossRefPubMedCentralGoogle Scholar
  8. 8.
    Manthorpe J, Iliffe S, Samsi K, Cole L, Goodman C, Drennan V et al (2010) Dementia, dignity and quality of life: nursing practice and its dilemmas. Int J Older People Nurs 5(3):235–244PubMedCrossRefPubMedCentralGoogle Scholar
  9. 9.
    Woods B (1999) Promoting well-being and independence for people with dementia. Int J Geriatr Psychiatry 14(2):97–105 (Discussion-9) PubMedCrossRefPubMedCentralGoogle Scholar
  10. 10.
    Arksey H, O’Malley L (2005) Scoping studies: towards a methodological framework. Int J Soc Res Methodol 8(1):19–32CrossRefGoogle Scholar
  11. 11.
    Mukadam N, Cooper C, Livingston G (2011) A systematic review of ethnicity and pathways to care in dementia. Int J Geriatr Psychiatr 26(1):12–20CrossRefGoogle Scholar
  12. 12.
    Cooper C, Ketley D, Livingston G (2014) Systematic review and meta-analysis to estimate potential recruitment to dementia intervention studies. Int J Geriatr Psychiatr 29(5):515–525CrossRefGoogle Scholar
  13. 13.
    Downs M, Lord K (2017) Person-centered dementia care in the community; a perspective from the United Kingdom. J Gerontol Nurs 43(8):11–17CrossRefGoogle Scholar
  14. 14.
    Rothera I, Jones R, Harwood R, Avery AJ, Fisher K, James V et al (2008) An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods. Int J Geriatr Psychiat 23(1):65–72CrossRefGoogle Scholar
  15. 15.
    McIntyre M (2003) Dignity in dementia: person-centered care in community. J Ageing Stud 17:11CrossRefGoogle Scholar
  16. 16.
    Brooker D (2006) Person-centred dementia care: making services better. Jessica Kingsley Publishers, LondonGoogle Scholar
  17. 17.
    Chung PYF, Ellis-Hill C, Coleman P (2017) Supporting activity engagement by family carers at home: maintenance of agency and personhood in dementia. Int J Qual Stud Health Well-being. 12(1):1267316PubMedPubMedCentralCrossRefGoogle Scholar
  18. 18.
    Smebye KL, Kirkevold M (2013) The influence of relationships on personhood in dementia care: a qualitative, hermeneutic study. BMC Nurs 12(1):29PubMedPubMedCentralCrossRefGoogle Scholar
  19. 19.
    Kontos P (2005) Embodied selfhood in Alzheimer’s disease: rethinking person-centered care. Dementia 4(4):17CrossRefGoogle Scholar
  20. 20.
    Zwijsen SA, Niemeijer AR, Hertogh CM (2011) Ethics of using assistive technology in the care for community-dwelling elderly people: an overview of the literature. Aging Ment Health 15(4):419–427PubMedCrossRefPubMedCentralGoogle Scholar
  21. 21.
    Behuniak SM (2010) Toward a political model of dementia: power as compassionate care. J Aging Stud 24:9CrossRefGoogle Scholar
  22. 22.
    Manthorpe J, Samsi K (2016) Person-centered dementia care: current perspectives. Clin Interv Aging 11:1733–1740PubMedPubMedCentralCrossRefGoogle Scholar
  23. 23.
    Cahill S (2018) Dementia and human rights. Policy Press, BristolCrossRefGoogle Scholar
  24. 24.
    Smebye KL, Kirkevold M, Engedal K (2016) Ethical dilemmas concerning autonomy when persons with dementia wish to live at home: a qualitative, hermeneutic study. BMC Health Serv Res 16:21PubMedPubMedCentralCrossRefGoogle Scholar
  25. 25.
    Tranvag O, Petersen KA, Naden D (2013) Dignity-preserving dementia care: a metasynthesis. Nurs Ethics 20(8):861–880PubMedCrossRefPubMedCentralGoogle Scholar
  26. 26.
    Daley S, Newton D, Slade M, Murray J, Banerjee S (2013) Development of a framework for recovery in older people with mental disorder. Int J Geriatr Psychiatr 28(5):522–529CrossRefGoogle Scholar
  27. 27.
    Perkins R, Hill L, Daley S, Chappell M, Rennison J (2018) Continuing to be me—Recovering a life with a diagnosis of dementia. Nottingham: ImROC, Implementing Recovery through Organisational Change. https://imroc.org/resources/12-continuing-recovering-life-diagnosis-dementia/
  28. 28.
    Menne HL, Kinney JM, Morhardt DJ (2002) Trying to continue to Do as Much as They Can Do: theoretical insights regarding continuity and meaning making in the face of dementia. Dementia 1(3):15CrossRefGoogle Scholar
  29. 29.
    Woodbridge R, Sullivan MP, Harding E, Crutch S, Gilhooly KJ, Gilhooly M et al (2018) Use of the physical environment to support everyday activities for people with dementia: a systematic review. Dementia (London) 17(5):533–572CrossRefGoogle Scholar
  30. 30.
    Hoppes S, Davis LA, Thompson D (2003) Environmental effects on the assessment of people with dementia: a pilot study. Am J Occup Ther 57(4):396–402PubMedCrossRefPubMedCentralGoogle Scholar
  31. 31.
    Kovach CR (2000) Sensoristasis and imbalance in persons with dementia. J Nurs Scholarsh 32(4):379–384PubMedCrossRefPubMedCentralGoogle Scholar
  32. 32.
    Kolanowski AM, Fick DM, Clare L, Therrien B, Gill DJ (2010) An intervention for delirium superimposed on dementia based on cognitive reserve theory. Aging Ment Health 14(2):232–242PubMedCrossRefPubMedCentralGoogle Scholar
  33. 33.
    Callahan CM, Boustani MA, Schmid AA, LaMantia MA, Austrom MG, Miller DK et al (2017) Targeting functional decline in alzheimer disease: a randomized trial. Ann Intern Med 166(3):164–171PubMedCrossRefPubMedCentralGoogle Scholar
  34. 34.
    Caron CD, Ducharme F, Griffith J (2006) Deciding on institutionalization for a relative with dementia: the most difficult decision for caregivers. Can J Aging 25(2):193–205PubMedCrossRefPubMedCentralGoogle Scholar
  35. 35.
    Hurley AC, Gauthier MA, Horvath KJ, Harvey R, Smith SJ, Trudeau S et al (2004) Promoting safer home environments for persons with Alzheimer’s disease. The Home Safety/Injury Model. J Gerontol Nurs. 30(6):43–51PubMedCrossRefPubMedCentralGoogle Scholar
  36. 36.
    Brodaty H, Gresham M, Luscombe G (1997) The Prince Henry Hospital dementia caregivers’ training programme. Int J Geriatr Psychiatr 12(2):183–192CrossRefGoogle Scholar
  37. 37.
    Gresham M, Heffernan M, Brodaty H (2018) The Going to Stay at Home program: combining dementia caregiver training and residential respite care. Int Psychogeriatr 30:1697–1706PubMedCrossRefPubMedCentralGoogle Scholar
  38. 38.
    Livingston G, Manela M, O'Keeffe A, Rapaport P, Cooper C, Knapp M, King D, Romeo R, Walker Z, Hoe J, Mummery C, Barber J (2019) Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial. Br J Psychiatry 12:1–8.  https://doi.org/10.1192/bjp.2019.160 CrossRefGoogle Scholar
  39. 39.
    Bunn F, Goodman C, Pinkney E, Drennan VM (2016) Specialist nursing and community support for the carers of people with dementia living at home: an evidence synthesis. Health Soc Care Commun 24(1):48–67CrossRefGoogle Scholar
  40. 40.
    Gaugler JE, Kane RL, Kane RA, Newcomer R (2005) Unmet care needs and key outcomes in dementia. J Am Geriatr Soc 53(12):2098–2105PubMedCrossRefPubMedCentralGoogle Scholar
  41. 41.
    Scholzel-Dorenbos CJ, Meeuwsen EJ, Olde Rikkert MG (2010) Integrating unmet needs into dementia health-related quality of life research and care: introduction of the Hierarchy model of needs in dementia. Aging Ment Health 14(1):113–119PubMedCrossRefPubMedCentralGoogle Scholar
  42. 42.
    Rockwood K, Graham JE, Fay S (2002) Goal setting and attainment in Alzheimer’s disease patients treated with donepezil. J Neurol Neurosurg Psychiatr 73(5):500–507CrossRefGoogle Scholar
  43. 43.
    Amella EJ, Batchelor-Aselage MB (2014) Facilitating ADLs by caregivers of persons with dementia: the C3P model. Occup Ther Health Care 28(1):51–61PubMedPubMedCentralCrossRefGoogle Scholar
  44. 44.
    Beck C, Heacock P, Rapp CG, Mercer SO (1993) Assisting cognitively impaired elders with activities of daily living. Am J Alzheimer’s Dis Dement 8(6):9Google Scholar
  45. 45.
    Graff C (2006) How can occupational therapy improve the daily performance and communication of an older patient with dementia and his primary caregiver? Dementia 5(4):29CrossRefGoogle Scholar
  46. 46.
    Laakkonen ML, Kautiainen H, Holtta E, Savikko N, Tilvis RS, Strandberg TE et al (2016) Effects of self-management groups for people with dementia and their spouses-randomized controlled trial. J Am Geriatr Soc 64(4):752–760PubMedCrossRefPubMedCentralGoogle Scholar
  47. 47.
    Martin F, Turner A, Wallace LM, Bradbury N (2013) Conceptualisation of self-management intervention for people with early stage dementia. Eur J Ageing 10(2):75–87PubMedCrossRefPubMedCentralGoogle Scholar
  48. 48.
    Cabin WD (2008) Moving toward Medicare home health coverage for persons with Alzheimer’s disease. J Gerontol Soc Work 51(1–2):77–86PubMedCrossRefPubMedCentralGoogle Scholar
  49. 49.
    Samus QM, Johnston D, Black BS, Hess E, Lyman C, Vavilikolanu A et al (2014) A multidimensional home-based care coordination intervention for elders with memory disorders: the maximizing independence at home (MIND) pilot randomized trial. Am J Geriatr Psychiatr 22(4):398–414CrossRefGoogle Scholar
  50. 50.
    Banerjee S, Wittenberg R (2009) Clinical and cost effectiveness of services for early diagnosis and intervention in dementia. Int J Geriatr Psychiatr 24(7):748–754CrossRefGoogle Scholar
  51. 51.
    Banerjee S, Willis R, Matthews D, Contell F, Chan J, Murray J (2007) Improving the quality of care for mild to moderate dementia: an evaluation of the croydon memory service model. Int J Geriatr Psychiatr 22(8):782–788CrossRefGoogle Scholar
  52. 52.
    Reilly S, Miranda-Castillo C, Malouf R, Hoe J, Toot S, Challis D et al (2015) Case management approaches to home support for people with dementia. Cochrane Database Syst Rev 1:CD008345PubMedPubMedCentralGoogle Scholar
  53. 53.
    Thyrian JR, Hertel J, Wucherer D, Eichler T, Michalowsky B, Dreier-Wolfgramm A et al (2017) Effectiveness and safety of dementia care management in primary care: a randomized clinical trial. JAMA Psychiatr 74(10):996–1004CrossRefGoogle Scholar
  54. 54.
    Goeman D, Renehan E, Koch S (2016) What is the effectiveness of the support worker role for people with dementia and their carers? A systematic review. BMC Health Serv Res 16:285PubMedPubMedCentralCrossRefGoogle Scholar
  55. 55.
    Khanassov V, Vedel I, Pluye P (2014) Case management for dementia in primary health care: a systematic mixed studies review based on the diffusion of innovation model. Clin Interv Aging 9:915–928PubMedPubMedCentralCrossRefGoogle Scholar
  56. 56.
    MacNeil Vroomen J, Bosmans JE, van de Ven PM, Joling KJ, van Mierlo LD, Meiland FJ et al (2015) Community-dwelling patients with dementia and their informal caregivers with and without case management: 2-year outcomes of a pragmatic trial. J Am Med Dir Assoc 16(9):800-e1CrossRefGoogle Scholar
  57. 57.
    Renehan E, Goeman D, Koch S (2017) Development of an optimised key worker framework for people with dementia, their family and caring unit living in the community. BMC Health Serv Res 17(1):501PubMedPubMedCentralCrossRefGoogle Scholar
  58. 58.
    Low LF, Fletcher J (2015) Models of home care services for persons with dementia: a narrative review. Int Psychogeriatr IPA 27(10):1593–1600CrossRefGoogle Scholar
  59. 59.
    Kohler L, Meinke-Franze C, Hein J, Fendrich K, Heymann R, Thyrian JR et al (2014) Does an interdisciplinary network improve dementia care? Results from the IDemUck-study. Curr Alzheimer Res 11(6):538–548PubMedPubMedCentralCrossRefGoogle Scholar
  60. 60.
    Evans S, Fear T, Means R, Vallelly S (2007) Supporting independence for people with dementia in extra care housing. Dementia 6(1):6CrossRefGoogle Scholar
  61. 61.
    Mittelman MS, Ferris SH, Shulman E, Steinberg G, Levin B (1996) A family intervention to delay nursing home placement of patients with Alzheimer disease: a randomized controlled trial. J Am Med Assoc 276(21):1725–1731CrossRefGoogle Scholar
  62. 62.
    Mittelman MS, Haley WE, Clay OJ, Roth DL (2006) Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology 67(9):1592–1599PubMedCrossRefPubMedCentralGoogle Scholar
  63. 63.
    Gaugler JE, Reese M, Mittelman MS (2013) Effects of the NYU Caregiver Intervention-Adult Child on residential care placement. The Gerontologist. 53(6):985–997PubMedPubMedCentralCrossRefGoogle Scholar
  64. 64.
    Levesque L, Gendron C, Vezina J, Hebert R, Ducharme F, Lavoie JP et al (2002) The process of a group intervention for caregivers of demented persons living at home: conceptual framework, components, and characteristics. Aging & Mental Health. 6(3):239–247CrossRefGoogle Scholar
  65. 65.
    Cooper C, Cenko B, Dow B, Rapaport P (2017) A systematic review evaluating the impact of paid home carer training, supervision, and other interventions on the health and well-being of older home care clients. Int Psychogeriatr IPA 29(4):595–604CrossRefGoogle Scholar
  66. 66.
    Cooper C, Tandy AR, Balamurali TBS, Livingston G (2010) A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. Am J Geriatr Psychiatr 18(3):193–203CrossRefGoogle Scholar
  67. 67.
    Boustani MA, Sachs GA, Alder CA, Munger S, Schubert CC, Guerriero Austrom M et al (2011) Implementing innovative models of dementia care: the healthy aging brain center. Aging Ment Health 15(1):13–22PubMedPubMedCentralCrossRefGoogle Scholar
  68. 68.
    Callahan CM, Boustani MA, Unverzagt FW, Austrom MG, Damush TM, Perkins AJ et al (2006) Effectiveness of collaborative care for older adults with Alzheimer disease in primary care: a randomized controlled trial. JAMA 295(18):2148–2157PubMedCrossRefPubMedCentralGoogle Scholar
  69. 69.
    Black BS, Johnston D, Rabins PV, Morrison A, Lyketsos C, Samus QM (2013) Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study. J Am Geriatr Soc 61(12):2087–2095PubMedPubMedCentralCrossRefGoogle Scholar
  70. 70.
    Eloniemi-Sulkava U, Notkola IL, Hentinen M, Kivela SL, Sivenius J, Sulkava R (2001) Effects of supporting community-living demented patients and their caregivers: a randomized trial. J Am Geriatr Soc 49(10):1282–1287PubMedCrossRefPubMedCentralGoogle Scholar
  71. 71.
    Eloniemi-Sulkava U, Saarenheimo M, Laakkonen ML, Pietila M, Savikko N, Kautiainen H et al (2009) Family care as collaboration: effectiveness of a multicomponent support program for elderly couples with dementia. Randomized controlled intervention study. J Am Geriatr Soc 57(12):2200–2208PubMedCrossRefPubMedCentralGoogle Scholar
  72. 72.
    Gaugler JE, Reese M, Mittelman MS (2013) Effects of the NYU caregiver intervention-adult child on residential care placement. Gerontologist 53(6):985–997PubMedPubMedCentralCrossRefGoogle Scholar
  73. 73.
    Joling KJ, van Marwijk HW, van der Horst HE, Scheltens P, van de Ven PM, Appels BA et al (2012) Effectiveness of family meetings for family caregivers on delaying time to nursing home placement of dementia patients: a randomized trial. PLoS One 7(8):e42145PubMedPubMedCentralCrossRefGoogle Scholar
  74. 74.
    Kurz A, Wagenpfeil S, Hallauer J, Schneider-Schelte H, Jansen S (2010) Evaluation of a brief educational program for dementia carers: the AENEAS study. Int J Geriatr Psychiatry 25(8):861–869PubMedCrossRefPubMedCentralGoogle Scholar
  75. 75.
    Menn P, Holle R, Kunz S, Donath C, Lauterberg J, Leidl R et al (2012) Dementia care in the general practice setting: a cluster randomized trial on the effectiveness and cost impact of three management strategies. Value Health 15(6):851–859PubMedCrossRefPubMedCentralGoogle Scholar
  76. 76.
    Nobili A, Riva E, Tettamanti M, Lucca U, Liscio M, Petrucci B et al (2004) The effect of a structured intervention on caregivers of patients with dementia and problem behaviors: a randomized controlled pilot study. Alzheimer Dis Assoc Disord 18(2):75–82PubMedCrossRefPubMedCentralGoogle Scholar
  77. 77.
    Teri L, Gibbons LE, McCurry SM, Logsdon RG, Buchner DM, Barlow WE et al (2003) Exercise plus behavioral management in patients with Alzheimer disease: a randomized controlled trial. JAMA 290(15):2015–2022PubMedCrossRefPubMedCentralGoogle Scholar

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© The Author(s) 2019

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

Authors and Affiliations

  • Kathryn Lord
    • 1
  • Jules Beresford-Dent
    • 1
  • Penny Rapaport
    • 2
  • Alex Burton
    • 2
  • Monica Leverton
    • 2
  • Kate Walters
    • 3
  • Iain Lang
    • 4
  • Murna Downs
    • 1
  • Jill Manthorpe
    • 5
  • Sue Boex
    • 6
  • Joy Jackson
    • 6
  • Margaret Ogden
    • 6
  • Claudia Cooper
    • 2
    Email author
  1. 1.Faculty of Health StudiesCentre for Applied Dementia StudiesBradfordUK
  2. 2.Division of PsychiatryUniversity College LondonLondonUK
  3. 3.Department of Primary Care and Population HealthUniversity College LondonLondonUK
  4. 4.South CloistersUniversity of ExeterExeterUK
  5. 5.Social Care Workforce Research UnitKing’s College LondonLondonUK
  6. 6.Alzheimer’s Society Research Network VolunteerLondonUK

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