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Behavioral and Psychological Symptoms of Dementia: An Overview of Theoretical Frameworks and Associated Non-Pharmacological Treatments for BPSD

 

ARLINDA CERGA-PASHOJA1,2, ASMAE DOUKANI1, PARTHENIA GIANNAKOPOULOU2

 

1. London School of Hygiene and Tropical Medicine, Centre for Global Mental Health, Keppel Street WC1E 7HT; 2. Imperial College London, Neuroepidemiology and Ageing Unit, Charing Cross Campus, St Dunstan’s Road, London, W6 8RP

Corresponding to: Arlinda Cerga-Pashoja, London School of Hygiene and Tropical Medicine, Centre for Global Mental Health, Keppel Street WC1E 7HT, a.cerga-pashoja@imperial.ac.uk,+ 44 2075943332

Care Weekly 2018;2:32-42
Published online November 5, 2018, http://dx.doi.org/10.14283/cw.2018.11

 


Abstract

Background: Behavioural and Psychological Symptoms of Dementia (BPSD) such as agitation and aggression are core symptoms of dementia and affect almost everyone with the condition. Such symptoms cause distress to the person with dementia and their caregivers and have also been found to predict early institutionalisation as well as death. Historically, BPSD have been managed with medication, typically using anti-psychotic drugs. However, recent data show that anti-psychotic medications increase mortality and the risk of stroke in people with dementia. On the other hand, non-pharmacological interventions such as sensory manipulation, psychological therapies and providing training and psychoeducation for caregivers, present more encouraging results. Consequently, there is a need to explore the potential impact of non-pharmacological interventions on BPSD.

Key words: BPSD, dementia, non-pharmacological treatments.


 

 

Introduction

Life expectancy is increasing globally, and is expected to continue to rise, especially in industrialised societies. This is resulting in an ever increasing dementia prevalence world-wide, with 4.6 million new cases being diagnosed each year and a prevalence that is expected to double between 2001 and 2040 (1).
Over 46 million people live with dementia worldwide and this number is estimated to increase to 131.5 million by 2050 (2). Alzheimer’s Society Report (2014) (3) indicates that there are 850,000 people currently living with dementia in the UK. It also claims that 163,000 new cases of dementia occur in England and Wales each year, which means a new case arises every 3.2 minutes. Approximately 6% of people aged over 65 years have some form of dementia (4), with the population prevalence rising to 20% in those aged over 80 years (5).

 

The Impact of Dementia

The cost of dementia to the economy is immense. The Dementia Report (2014) (3) reveals that dementia costs the UK economy about £26 billion a year, which is more than the cost of cancer and heart disease combined. The global cost is even more prominent being estimated as US $818 billion in 2015, and a trillion dollars by 2018 (6). As a result, dementia has been described as “the greatest medical challenge of the 21st century» (7).
Investments in dementia research, however, remain relatively modest. In the UK, the combined government and charitable investment in dementia research, in 2010 was 12 times lower than spending on cancer research. Over £590 million is spent on cancer research each year, while just £50million is invested in dementia research.
There are 6.5 million people in the UK who provide unpaid care and support to older people with dementia (8). This number is predicted to reach 9 million by 2037 (9). According to the Dementia Report (2010) 25 million people or 42% of the UK population know someone close to them who has been diagnosed with dementia. The Alzheimer’s Research Trust (2010) reports that 1.4 million of carers provide more than 50 hours per week unpaid care, thereby, saving the UK economy £8 billion per year.
Caring for people with dementia comes at a considerable personal financial, physical, mental and psychological price for the carers. Carers of people with dementia experience more physical and mental health problems (10, 11) and get more distressed (12, 13) when compared to their counterparts who look after older people without dementia. Despite the fact that carers bring huge savings to the economy, 75% of them report that they are worse off financially as a result of caregiving (14). Carers report reduced income or working hours, missing out on opportunities for promotion, or being forced to give up work, as a result of their caring responsibilities (15).

 

Behavioural and Psychological Symptoms of Dementia

Behavioural and psychological symptoms of dementia (BPSD) are also known as neuropsychiatric or non-cognitive symptoms, are common and distressing features of the condition. As highlighted in Table 1, psychological symptoms can include anxiety, depressed mood, hallucinations and delusions. Behavioural symptoms refer to aberrant motor behaviour, verbal and physical aggression, screaming, restlessness, agitation, swearing, wandering, apathy, culturally inappropriate behaviours, disinhibition and hoarding (16). Unlike cognitive functioning of people with dementia that progressively deteriorates, BPSD symptoms typically fluctuate over the course of dementia (17, 18).

Table 1. Common behavioural and psychological symptoms of dementia

Table 1. Common behavioural and psychological symptoms of dementia

 

Phenomenology, Prevalence and Incidence of BPSD

The term ‘Behavioural and Psychological Symptoms of Dementia’ was introduced in 1999 by the International Psychogeriatric Association (IPA) who has been at the forefront of raising awareness about BPSD.
It is estimated that over 90 percent of people with dementia are likely to experience BPSD such as changes of personality and behaviour (19, 20) and sleep disruption (21). People with dementia are four times more likely to experience BPSD than older adults without dementia (22). Prevalence estimates for BPSD vary due to heterogeneity of population sample studied, in relation to diverse settings, type of dementia, different study designs, study sample size, different instruments used to measure the symptoms and the different definitions used for BPSD (23–27). Such estimates suggest that the prevalence of BPSD is more common in nursing homes than in community settings (28).
The development of BPSD is associated with a worse prognosis and faster rate of dementia progression (29). Untreated BPSD brings about a reduction in the quality of life for the person suffering from the condition and causes significant distress (26, 30, 31). Treating BPSD symptoms, can have a reparative impact on functional impairment, through reducing patient and carer distress and improving quality of life.
BPSD symptoms increase carer stress (32) and have a negative effect on their quality of life (33). Behaviours that challenge carers especially depression and low-mood are reported to have a consistent and powerful negative impact on the psychological health of carers (34). Behavioural and Psychological Symptoms of Dementia cause distress for carers and can contribute to the breakdown in care at home and lead carers to transfer the care of the person with dementia to a  care home (35–38). For instance, the increased burden that is placed on the carer in relation to specific BPSD symptoms such as sleep disturbances (i.e. nightly restlessness and wandering) have been found to predict the relocation of care to nursing or residential homes (39. 40).
Untreated BPSD can also cause stress to nursing staff in residential facilities (41, 42) and increase financial costs (30, 43, 44).

 

Aetiology of BPSD

Different theoretical frameworks have been proposed to explain the aetiology of BPSD. These theories are divided into two major groups, neurobiological and psychosocial, and have driven the development of a variety of distinct interventions for BPSD.

 

The Neurobiological Theories of BPSD

The neurobiological/genetic theories of BPSD are predominant within medicinal research and practice, and assert that BPSD are the direct cause of cognitive decline, brain dysfunction, imbalance of neurotransmitters and genetic characteristics (45). Boyle and Malloy (2004) claim that apathy is triggered by an interaction between cholinergic deficiency and neuropathological changes in frontal brain regions. Agitation and psychosis are reported to be specifically correlated with a high burden of neurofibrillary tangles (47, 48).

 

The Neurobiological Theories of BPSD

Cohen-Mansfield (2000) (49) has proposed three psychosocial models of BPSD:
•    The unmet needs model
•    Learning/behavioural model
•    Environmental vulnerability/reduced stress-threshold model

The Unmet Needs model suggests that the dementia process affects both the ability of the person with dementia to use the environment appropriately to meet their needs and their ability to communicate their needs effectively (105–107). The interaction of such impairments with longstanding habits, personality, physical and mental states and unfavourable environmental conditions, can give rise to BPSD.
The Learning/Behavioural model proposes that BPSD develop as the direct result of conditioning. The basis of conditioning suggests that a reward which follows a particular response, acts as a reinforcer and increases the likelihood that the response will be repeated. For example: under-stimulation in a nursing home (bored, lonely) -> triggers agitation in a person with dementia -> staff engage more and try to calm and pacify the resident. While this may fulfil the social need of the person with dementia, the attention received by care staff reinforces agitated behaviours.
Lastly, the Environmental Vulnerability/Reduced Stress-Threshold model suggests that a person’s needs and abilities need to match the environmental demands (105). This model maintains the decreased level of competence of people with dementia, is likely to increase the likelihood that they will be disturbed by the environment. Therefore, environmental stimuli that are inappropriate and exceed the individual’s threshold for tolerating stress, result in negative mood and challenging behaviours (BPSD).
The three psychosocial models described above may be complementary and are not mutually exclusive.  Different models may also account for different BPSD symptoms in different individuals.

 

Treatments for BPSD

Conventionally, a pharmacological approach has dominated the clinical management of BPSD. Common forms of treatments include mood stabilisers, anxiolytics, hypnotic and antipsychotic medications and more recently, cholinesterase inhibitors. Antipsychotic medications (e.g. haloperidol, risperidone, olanzapine) have been overly used to manage behavioural problems such as agitation and aggression. However, there are long-standing concerns that treating aggressive behaviour with pharmacological methods suppresses behaviour without addressing the cause (50, 51).
Use of antipsychotics in dementia increases the likelihood of stroke and premature death, leading  health authorities in the United States (52) and the UK (53) to issue caution to clinicians, recommending that the use of such drugs in the care for dementia should be avoided (51, 54). In the UK, the NICE/SCIE guidelines encourage clinicians to treat BPSD with non-pharmacological methods in the first instance, unless the patient is severely distressed and there is an immediate risk of harm to themselves or others (55). Long-term psychosocial strategies may be a better way to achieve the best quality care possible for people with dementia and those whom support them. For this reason, non-pharmacological alternatives are now being considered as first-line management of BPSD (56).

 

Non-pharmacological interventions for BPSD

The growing recognition of the importance of BPSD symptoms and the rising concern regarding their treatment with antipsychotic drugs have triggered a surge of interest in developing and applying non-pharmacological interventions as treatments for BPSD. Table 2 presents our summary of non-pharmacological interventions for BPSD. The main headings represent the category under which individual interventions have been included. Most of the individual therapies may be categorised under more than one heading, for example reduced sensory stimulation can be classified as sensory manipulation as well as environment manipulation and social contact. However, for ease of description individual interventions have been categorised under one heading.
Sensory manipulation treatments are primarily used with people with moderate to severe dementia and have been focusing on both stimulation enhancement and reduction. Stimulation enhancement approaches have been used to provide meaningful stimulation, reduce anxiety/agitation and improve mood and are based on the ‘unmet needs’ and ‘environmental vulnerability’ models, which propose that BPSD may result from periods of sensory deprivation (57). Massage therapies have included hand massage with essential oils (58–60), electrical nerve stimulation (61) and craniosacral therapy1  (62). All these studies, apart from Scherder et al. (1995) have indicated decrease on agitation, wandering and fidgety behaviours, however, they are quite small with samples varying from 14-30 participants and the methodologies used are not robust (not blinded, no control group) (63).
•    Aromatherapy involves the use of essential oils such as lavender, thyme and melissa (lemon) balm for treatment of agitation in people with dementia. These oils have been applied in different ways such as by diffusion in communal areas (64), bedside diffusers (65), applied to the skin (66) and as sachets (67). Most of these studies have reported significant reduction in agitation and excellent compliance with the intervention (68). The study from Ballard and colleagues (2002) is a randomised controlled trial (RCT) that reported not only significant reductions in agitation but also excellent compliance with the intervention. However, the intervention itself was more than just aromatherapy as it also involved increased social contact whereby Melissa balm was applied twice a day on participants’ faces and arms, which may also be considered as massage. Therefore, the benefit of aromatherapy is still under investigation and it has been reported as one of the fastest growing complementary therapies (69, 70).
•    Music interventions have been quite heterogeneous, ranging from listening to music for relaxation and anxiety reduction (71, 72), during mealtimes (73, 74) or bath-times (75), to dancing, singing, playing musical instruments, or participating in composition and improvisation sessions (57, 76, 77). All of the above studies reported some benefits in terms of decreased agitation, reduction of aggressive behaviours and grater positive engagement. The main disadvantage of music intervention studies is that most of them have very small sample sizes (ranging from 10-46 participants); have employed within-participants experimental design; and use direct observational methods which are susceptible to rater bias and Hawthorne effect. Therefore the chance of obtaining significant results is reduced and the findings remain inconclusive (78). White noise (environmental sounds) has also been used to induce relaxation and sleep, and consequently reduce verbal agitation and wandering (79). Different music interventions feed into different psychosocial theories. For example listening for relaxation is based on the unmet needs and environmental vulnerability hypotheses; music use during bath and mealtimes is based on the above mentioned hypotheses as well as the learning/behavioural theory.
•    Multi-sensory stimulation (MSS) or Snoezelen therapy, which is also considered as an emotion-oriented approach, combines relaxation and exploration of sensory stimuli such as lights (e.g. fiber optics), sounds and tactile sensations (cushions, vibration pads). This therapy is usually delivered in dedicated rooms and sessions are tailored to individual needs (68). Multi-sensory stimulation is primarily used to reduce apathy in people with advanced dementia. Baker et al. (2001) examined the effects of MSS on 25 participants with moderate to severe dementia through an RCT and found significant reduction in dysphoric mood. However, when the same authors (81) ran a second, bigger trial (n=65) they did not find any significant differences between the control and intervention arms. The cost and complexity of MSS rooms can be a barrier to using them especially as evidence in their favour is not very robust.
•    Decreased sensory stimulation interventions are based on the ‘reduced stress threshold’ model, which suggests that BPSD can result as a consequence of over or inappropriate stimulation. This approach has been applied in care or residential homes where the levels of over-stimulation are higher than family homes. Two small studies (82, 83), with samples of 11 participants each, explored benefits of “quiet” interventions in agitation symptoms.  Meyer et al. (1992) introduced a ‘quiet week’ which included turning off the television, lowering voices and reducing fast movement by staff at a day centre, and found a significant decrease in agitated behaviours. Cleary et al. (1988) took a more holistic approach by removing sources of stimulation such as TVs, radios and telephones as well as by manipulating the environment (introducing: smaller tables for eating and activities or neutrally painted walls), educating carers and training staff. These authors also reported decrease in agitation.  Overall, there is limited evidence about the effectiveness of these interventions on BPSD.

Kovach et al. (2004) has taken a noteworthy approach to the subject of stimulation and its relationship to BPSD. These authors propose a model called Kovach’s Model of Imbalance of Sensoristasis, which describes the importance of keeping in balance sensory-stimulating and sensory-calming activities as this imbalance can give rise to or exacerbate agitation in advanced dementia. This model is consistent with Cohen-Mansfield’s (2000) environmental vulnerability/reduced stress-threshold model.

Table 2. Non-pharmacological therapies for BPSD

Table 2. Non-pharmacological therapies for BPSD

 

Social Contact

The next group of interventions include interventions that focus on real or stimulated social contacts and are based on the ‘unmet needs’ model of BPSD. Several studies suggest beneficial effect of pet therapy on agitation and verbal aggression (85–88).
•    Reminiscence therapy (RT) uses materials (e.g. old newspapers, photographs and household items), music and art to stimulate memories and enable people to relive past experiences that are highly significant to them. This approach was originally but unsuccessfully utilised as an intervention for improving cognitive symptoms of dementia, but it has been shown to improve level of psycho-social wellbeing of people with dementia (Brooker & Duce, 2000; Lai, Chi, & Kayser-Jones, 2004; Woods, Spector, Jones, Orrell, & Davies, 2005). Reminiscence therapy is flexible and can be adapted to groups as well as individual needs. However, there is limited evidence of a significant impact of RT in BPSD (Woods et al., 2005).
•    Simulated presence therapy is grounded in the unmet needs and environmental vulnerability theories and entails use of videos or audio recordings of family members sharing conversations and memories with the person with dementia. This intervention has been used in care and residential homes. Two studies have reported reduction in physical and verbal agitation and greater frequency of happy expressions during treatment, however, these benefits do not seem to last beyond exposure time (92, 93).

 

Psychological therapies and emotion oriented approaches

•    Differential reinforcement aims to reduce or eliminate maladaptive behaviours by using positive reinforcement in a structured way to increase desirable behaviour and is based on the ‘learning/behavioural model’. Rogers et al. (1999) applied behavioural rehabilitation to reduce disruptive behaviour in nursing home residents with dementia. Doyle and colleagues (1997) also used reinforcement of quiet behaviour and environmental stimulation to decrease noise-making in 12 long-term-care residents with severe dementia. There have not been any reports of more recent interventions of differential reinforcement.
•    Reality orientation (RO) is based on the idea that impairment in orientation and confusion prevent people with dementia from functioning well and is supported by the environmental vulnerability and the unmet needs models. RO facilitates re-orientation through: reminding people with dementia of facts about themselves; and through environmental manipulation (such as using signposting, clocks, calendars, newspapers, television, pictures, personal belongings). The efficacy of RO has been criticised by several authors who found RO classes non-efficacious (96); with little long-term effect (97); or argued that RO can have a negative effect on mood through reminding people of their prognosis (98, 99). Dietch and colleagues (1989) claimed that insensitive use of RO through incessantly correcting and challenging people with dementia could result on demeaning and confrontational experiences for this vulnerable population. However, more recent reviews (Spector, Davies, Woods, & Orrell, 2000; Spector, Orrell, Davies, & Woods, 2001)  have been quite favourable to RO and its outcomes. In fact it seems as though, after a loss of interest for this approach in the nineteen eighties, interest in RO has been reawakened (Spector et al., 2001; Woods, 2002) under the new term Cognitive stimulation therapy (CST).
•    Cognitive stimulation therapy, unlike RO, is grounded in person-centred care (104) and its key principles are to appropriately and sensitively use multi-sensory stimulation to re-orient people with dementia and strengthen relationships with carers (Spector, Orrell, & Goyder, 2013). This approach is predominantly used in group of patients with mild to moderate dementia, as participants need to be able to carry out meaningful conversations and participate in group activities.
•    Validation therapy (VT) is based on the Rogerian humanistic psychology argument that BPSD symptoms are strategies used by people with dementia to avoid stress, boredom and the painful reality of their condition (97). Validation therapists propose that empathic communication with individuals with dementia is essential rather than their orientation to the present. Neal and Barton Wright (2003) evaluated validation therapy through a Cochrane review and concluded that evidence about the efficacy of validation therapy is insufficient.

 

Environmental interventions

Environmental interventions include modifications of the factors that may cause or exacerbate BPSD such as: excessive noise (reduced stress threshold model), lack of routine (unmet needs model), inadequate lighting (environmental vulnerability model), confusing surroundings, and excessive demands by staff in residential settings (learning/behavioural model) (107). Many of these approaches have focussed exclusively on assisted-living facilities. Some of the environmental interventions include:
•    Enhanced environments – Several non-randomised trials have investigated the effect of environment manipulation on agitation symptoms and exit-seeking behaviours of people with dementia in residential settings. Different approaches entailed: painting two dimensional grids on the floor in front of exit doors (108–110); painting murals over doorways (111); and placing blinds and cloth barriers over doors or door handles (112, 113). Chafetz (1990) concluded that the two-dimensional grid is ineffective, however, the other authors reported on reduced exiting behaviours and ambulation.
•    Wandering areas/ Removal of restraints – A few authors have criticised the reduced autonomy in institutionalised patients, and have argued that these settings exacerbate or even cause BPSD. Two studies found that unlocking exit doors in a residential home, and release from mandatory confinement in an acute unit reduced agitation as well as both physical and verbal aggression (114, 115).
•    Light therapy – Light therapy has been utilised to improve circadian rhythms, which are impaired in people with dementia (116). This approach is supported by the ‘unmet needs’ model as it attempts to improve sleep (117, 118) and consequently reduce agitation (119, 120). The above studies have reported benefits on sleep and agitation, but other studies have reported no effect (121, 122). Overall, the support for this approach remains inconclusive as the reported studies are small non-RCTs (57, 123, 124).

 

Training and psychoeducation programmes for carers

This approach focuses on improving carers’ knowledge of dementia and BPSD, improving communication with people with dementia, and on providing potential management strategies for BPSD.  Reduced agitation has been reported after training staff on communication skills (125), empathy (126), tailored and focused care (127–129). Psychoeducation interventions with family carers have also resulted in improved mood (130) and decreased or delayed institutionalisation (131, 132). All the above studies report improved outcomes immediately after the intervention, however this effect ceases not long afterwards, indicating that educational programmes should be of an ongoing nature rather than a one-off intervention (133).

 

Structured activities

•    Recreational activities such as sewing, dancing, games, playing instruments have been reported to have a positive effect on agitation (134) and wandering behaviours (135, 136). These findings, however, are based on a small number of non-randomised studies.
•    Physical activities include various types of physical exercises such as outdoor walks (137, 138), Tai Chi (139), strength and flexibility training (140), walking, cycling, chair based exercise (141).

 

Conclusions

Behavioural and psychological symptoms are some of the most common elements and signs of dementia. Their heterogenous aetiology is drawn from both neurobiological and psychosocial factors as well as environmental ones. Pharmacological approaches have dominated BPSD treatment plans during the past years, although concerns regarding the long-term impact on disease and mortality overall along with their role in targeting the actual causes rather than the symptoms themselves have frequently been raised. As such, most recently, alternative approaches, utilizing non-pharmacological interventions have gained increased attention with positive results. Sensory manipulation interventions, such as aromatherapy and decreased sensory stimulation, psychological therapies and emotion-oriented approaches, as well as training in communication and psychoeducation of the caregivers, present the most encouraging results. In addition, and in the same context, environmental interventions underline the importance of light therapy and enhanced environments approaches. Consequently, non-pharmacological interventions could potentially play a pivotal in BPSD management. They offer an individualized treatment plan free of pharmacological side effects while facilitating a strong interaction between people suffering from dementia and their caregivers with significant long-term impact. Despite the encouraging evidence, non-pharmacological interventions are still quite limited. Therefore, further research would be necessary to explore the full potential of those interventions on BPSD.

 

Conflict of Interest
We declare that we have no conflict of interest.

 

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“IT TOOK THE STRESS OUT OF GETTING HELP”: THE STAR-CTELEMEDICINE MIXED METHODS PILOT

 

A. Lindauer1, R. Croff1, K. Mincks1, N. Mattek1, S.J. Shofner2, N. Bouranis3, L. Teri4

 

1. Oregon Health & Science University, Portland, Oregon, Layton Aging and Alzheimer’s Disease Center, USA; 2. Portland State University, Portland, Oregon, USA; 3. Oregon Health & Science University-Portland State University School of Public Health; 4.  University of Washington, School of Nursing & Northwest Roybal Center; Northwest Research Group on Aging

Corresponding to: Allison Lindauer, PhD, NP, Assistant Professor, Layton Aging and Alzheimer’s Disease Center, Director, Outreach, Recruitment & Education, Assistant Professor, OHSU School of Nursing, 3181 SW Sam Jackson Park Road, CR131; Portland, Oregon  97239, USA, Tel:  503-494-6976| Fax: 503-494-7499; lindauer@ohsu.edu

Care Weekly 2018;2:25-31
Published online July 3, 2018, http://dx.doi.org/10.14283/cw.2018.4

 


Abstract

Background: Caring for a family member with Alzheimer’s disease and related dementias can be mentally and physically taxing.  Support programs are available to mitigate the strain of care, but caregivers report access challenges (e.g., distance).   STAR-C is an evidence-based, effective, one-on-one caregiver educational intervention.   However, family caregivers who do not live near a STAR-C consultant (e.g., rural caregivers) cannot participate in the program.  The earth-bound mode presents a critical barrier to widely-available caregiver support.

Objectives: We assessed the feasibility, preliminary efficacy, and cost of implementing a caregiver support intervention (STAR-C-Telemedicine), using Internet-based videoconferencing.

Design: Using a mixed-methods approach, we examined feasibility and pre- and post-intervention changes in caregiver burden.  Focus groups provided feedback on program acceptability.

Setting: Participants, in their own homes, connected the university-based study staff using videoconferencing technology.

Participants:  Twenty family caregivers for those with dementia consented to the study.

Intervention:  The STAR-C-TM intervention included 8 weekly sessions in which the university-based consultant met (via videoconferencing) with caregivers in their homes.  The intervention focused on identifying upsetting behaviors and identifying triggers to the behaviors.
Measurements:  We assessed caregiver burden, depression and desire to institutionalize prior to and after the intervention.

Results: Fourteen caregivers (82% of those who started the intervention) completed all study components.  We found statistically significant reductions in caregiver burden.  Caregivers liked the videoconferencing option. Almost two-thirds reported, given the choice, that they would prefer it over an in-person offering. STAR-C-TM saved, on average, $1150/per caregiver over the traditional program.  Qualitative findings supported the quantitative data.

Conclusions: Telemedicine-based support for family caregivers is a feasible and cost-effective option.  As the prevalence of dementia grows, programs such as STAR-C-TM can fill an important gap in caregiver education and support.

Key words: Caregivers, dementia, telemedicine.


 

Introduction

Alzheimer’s disease and related dementias (ADRD) affect almost 47 million people around the globe, with worldwide costs approaching 1 trillion dollars (US) in 2018 (1). ADRD is emotionally taxing as well (2). As those with dementia develop memory loss and behavioral symptoms, their family caregivers often experience emotional, physical and financial strain (2, 3).
The hallmark symptom of ADRD, a group of progressive neurodegenerative diseases with no cure, is cognitive impairment (4). However, it is the behavioral symptoms (e.g., irritability, pacing, medication refusal) that predict caregiver burden and depression (5, 6). While we wait for a cure, efforts to contain these emotional and financial costs should focus on supporting the health and well-being of all living with ADRD, including the family caregivers.  Telemedicine-based support and education has the potential to curb these costs for any caregiver with a computer and Internet access.
Evidence-based programs for caregivers are available to sustain their emotional health by easing burden and ameliorating depressive symptoms through education (7). However, caregivers report multiple barriers to participation, including inconvenient meeting times, lack of respite care for the person with ADRD, lengthy travel time and stigma (8, 9).
With the aim of improving access to caregiver support, interventionists have turned to technology.  Internet chat rooms, self-paced programs, and videoconferencing programs are options discussed in the literature (10-13).  Many of these telemedicine-based interventions are group-based, yet the evidence suggests that individualized interventions are more effective in reducing caregiver distress (7). Few of the telemedicine-based opportunities reported in the literature are one-to-one options that take advantage of the social connection permitted by face-to-face videoconferencing (10). More personalized choices are needed to fit the heterogenic needs of family caregivers. STAR-C is an example of such an intervention, and it is well-suited for translation into a direct-to-home telemedicine program (14).
STAR-C is an evidence-based program that teaches family caregivers how to manage behavioral disturbances in family members with ADRD, with the goal of reducing behavioral symptoms and, in turn, caregiver burden (14, 15).  STAR-C significantly reduces caregiver burden and depression, and improves quality of life for those with ADRD.(14, 15). STAR-C uses “consultants,” health care providers (e.g., nurses & social workers), who meet one-on-one with caregivers in their homes.  However, this in-home training is not available for those who do not live near a consultant.
To increase caregiver access to STAR-C, we developed and tested STAR-C-Telemedicine (TM).  Our exploratory study had three aims: (1) Examine feasibility, cost, and consumer satisfaction with STAR-C-TM (2), compare scores on measures of caregiver depression and burden before and after the STAR-C-TM intervention (3), explore effect of STAR-C-TM training on LTC placement plans for care recipients.

 

Methods

Subjects

Twenty caregivers for persons with ADRD consented to participate in the study.  All study activities were approved by the OHSU IRB (#15695).  Caregivers were recruited from the OHSU Aging and Alzheimer’s Disease Clinic and community organizations.  Caregivers were over age 18 and spent at least four hours/day caregiving.  All care recipients had a diagnosis of ADRD, which includes Alzheimer’s disease (AD), Lewy Body disease, and vascular dementia.  Care recipients exhibited three or more behaviors that were upsetting to the caregiver (e.g., pacing, yelling, medication refusal).   Both caregivers and care recipients consented to the study, via telephone, but if care recipients did not have capacity to consent, caregivers consented for them, per our IRB-approved policy.
Participants used computers or tablets with Internet connectivity to access STAR-C-TM.  We provided iPads for those who did not have computers or strong broadband connections.  The two iPads were programmed by the OHSU Telehealth Department, and only the study could be accessed.  We mailed the iPads to participants with return packaging and postage; all iPads were successfully returned.

Procedures

After consenting to the study, participants were asked to complete five components that made up the study protocol: (a) technological set-up, (b) pre-intervention assessment, (c) STAR-C TM intervention, (d) post-intervention assessment, and (e) an optional post-intervention focus group.
The Research Assistant (RA, KM) provided the videoconferencing link and coached caregivers on downloading and using the link.  She assisted caregivers with technical challenges throughout the participation period.  After the videoconferencing was set up, the RA administered assessments via telemedicine directly to participants in their homes (see Measures).
The PI, an advanced practice nurse with a PhD in gerontological nursing, was the consultant in this pilot.  She provided 8 weekly, hour-long, direct-to-home sessions, via videoconferencing, to the caregivers per the original STAR-C protocol (Table 1).  Caregivers received a booklet, Understanding Alzheimer’s and weekly handouts.  If the caregivers agreed, the sessions were videotaped for quality assessment and training.  The consultant telephoned the caregivers at 1 and 2 months after the 8 sessions to review material and address additional concerns.

Table 1

Table 1

As with the original face-to-face intervention, the STAR-C-TM consultant and caregiver sessions were private.  Care recipients had to be engaged in a separate activity (e.g., taking a nap, watching television) in another room while caregivers participated in the training sessions.
The post-assessment was administered within a week of completion of the 8-week sessions, then two months after the last intervention session.  The post-intervention assessments were identical, except for the pre-intervention demographic survey and a user satisfaction survey used on the final assessment (16).
Caregivers who completed all the above elements were asked to participate in an optional focus group.  Two focus groups (total of 7 caregivers) were conducted via videoconferencing. An independent scientist, (RC) moderated the groups.

 

Measures

We assessed feasibility and participant satisfaction with two surveys and two focus groups (16, 17). Caregiver burden was assessed with the 24-item Revised Memory and Behavior Problems Checklist (RMBPC) (18), and the Screen for Caregiver Burden (SCB) (19). The RMBPC  and has excellent reliability when used with videoconferencing technology (ICC=0.80)(20).
The Desire to Institutionalize (DTI) scale (21) includes 5 dichotomous items and one modified item that rates the likelihood of placement on a 5-point Likert scale (1, “not at all likely” to 5, “very likely”).   Caregiver depressive symptoms were measured with the Center for Epidemiologic Studies Depression Scale (CES-D) (22).
To characterize cognitive impairment in care recipients, the Montreal Cognitive Assessment (MoCA) was administered via videoconferencing, prior to the caregiver intervention.  The MoCA is a 30-item tool used to assess cognitive impairment and is reliable when used with telemedicine videoconferencing (ICC=0.93) (20, 23). After the MoCA, care recipients no longer participated in the study and did not have any further testing.
We compared the cost of providing STAR-C-TM to the traditional, in-person STAR-C. We calculated the theoretical costs of travel, fuel, and consultant time for each family if we had to travel to their homes to administer the STAR-C intervention.

Data Analysis

Descriptive statistics were used to describe the sample. Feasibility was assessed quantitatively by calculating the proportion of participants who completed the full intervention to the total number who enrolled and completed the first assessment.  Consumer satisfaction and feasibility was assessed qualitatively via focus group feedback.  The focus groups were recorded, and the resulting transcriptions were analyzed using constant comparative analysis techniques with an interpretive phenomenological lens.   Interpretive phenomenology seeks to identify the meanings people ascribe to daily phenomena (24). We used the online Dedoose program (https://www.dedoose.com) to facilitate our analysis.
Preliminary efficacy was assessed by comparing the outcome measures before and after the intervention using paired t tests (25). DTI scores were calculated. STAR-C-TM costs were compared to traditional STAR-C costs.

 

Results

Participants

Twenty caregiver/care recipient dyads consented to the study; 14 completed all study components (Table 2).  Three participants consented but did not complete any assessments.  Another three participants started the intervention but withdrew before completing the protocol.  None withdrew due to technical difficulties.  There were no differences in age or education of the caregivers or care recipients of those who withdrew (n=3) compared those who completed study. There were no differences in age, education or comfort with computer use between the caregivers who participated in the focus groups (n=7) compared those who did not.

Table 2

Table 2

Feasibility/Ease of Use (Aim 1)

Of those that started the intervention (n=17), 82% (n=14) completed all eight sessions and assessments.  Caregivers who completed the intervention found it easy to attend STAR-C-TM visits and all 14 caregivers agreed that their privacy was protected.   Finding an activity for the care recipient during the sessions was somewhat challenging, with one in three having some difficulty (Table 3).
There were some technological issues (e.g., pixilation, dropped calls, sound distortion), however, these were interruptions that did not affect the delivery of the intervention.   Some of the caregivers were unfamiliar with technology and step-by-step instructions, by our RA, were needed.  None of the caregivers dropped out due to connectivity issues.
Qualitative data from the focus groups rounded out the quantitative findings by providing information about the meaning STAR-C-TM held for the caregivers.  Overall, STAR-C-TM meant increased access for caregivers: “This was a godsend to me. I live in [a rural area]; it’s a ways to get up there. This was fantastic…I can’t say enough good things about it, to tell you the truth.”  Caregivers felt that STAR-C-TM “…took the stress out of getting help.”
One caregiver expressed frustration with videoconferencing: “I think I had a few more technical challenges. It’s not that I’m not tech savvy, but the audio stuff, my head phones weren’t working right… it was… kind of annoying sometimes… But once everything was set up it really did feel very conversational and very comfortable.  I didn’t feel like it was weird to be having a conversation via computer…”
Another caregiver was concerned that the videoconferencing sessions without her care recipient felt clandestine (even though care recipients consented to the study); she felt she was “telling secrets” about him.  On the other hand, some caregivers felt it was easier to have the STAR-C-TM sessions in their homes so they could keep an eye on their care recipient while engaged in the sessions: “…it’s that tension of feeling like you’re at home and you need to be available, but you also want some privacy to have these conversations.”

Table 3

Table 3

 

Most participants felt that the videoconferencing was easier than an in-person option: “…I thought this format maybe was better than almost a face to face…It was very focused.  It was very intimate.  And it was very substantive.”  This aligns with the quantitative data in which almost two thirds of the participants preferred the telemedicine option only, fewer than half would have preferred a combination of in-home and telemedicine, and none preferred in-home STAR-C over the telemedicine option (Table 4).

Table 4

Table 4

When asked what was most problematic about STAR-C-TM one caregiver replied: “Well, the fact that it was over.”  While caregivers liked the one-on-one sessions, some felt there could be additional group work to decrease isolation: “I wouldn’t want to give up the individual.  I’m greedy.  If I can have some group sessions in addition…that would be delightful…”
Our last feasibility assessment was cost.   STAR-C-TM saved, on average, $1150/person over traditional, in-person STAR-C.  This was due to the elimination of travel and fuel costs.

Efficacy (Aim 2)

We saw decreases in the frequency of upsetting behaviors and reductions in the caregivers’ reactivity to the behaviors on the RMBPC.(18)  No significant changes were noted on the CES-D (22) or the SCD (19) (Table 5).  These findings are based on a small sample size (n=14) and lack sufficient power for identifying any important effects of the intervention.

Table 5

Table 5

Desire to Institutionalize (Aim 3)

No significant changes were noted on the DTI.  For the 14 that completed the study protocol, one caregiver noted she would possibly place and another reported she was “very likely” to place at the final assessment.  These two caregivers had lower (better) scores on the CESD (22) and the RMBPC (18) than the sample average, but their care recipients had lower (worse) scores on the MoCA (23) than the group average.

 

Discussion

Our pilot findings suggest that it is feasible to administer STAR-C-TM directly to caregivers’ homes using telemedicine-based videoconferencing, and the caregivers liked the telemedicine-based option (Aim 1).  STAR-C-TM reduced the behavioral symptoms of dementia and caregiver reactivity to them (Aim 2), but STAR-C-TM did not reduce the caregivers’ considerations for long term placement (Aim 3).
For Aim 1, our findings mirrored McCurry et al.’s (2015) in which most participants completed the all 8 sessions.  The percentage of caregivers who completed our intervention (82%) was lower than Teri et al.’s (2005) (89%), but higher than McCurry et al.’s (2015) Oregon-based study (64%). The high completion rates and strong consumer acceptance may be due to three qualities of STAR-C-TM:  It was possible, private and personalized.
First, it was possible for the caregivers and consultant to engage in STAR-C-TM because the videoconferencing option was available online and inexpensive.  Oregon ranks 4th in the nation for broadband coverage, making the telemedicine mode of care an accessible option for many.(26)  Arguably, broadband coverage is limited in some areas, which is an obstacle to widespread implementation of programs like STAR-C-TM.  Yet, this trend is shifting, indicating that broadband coverage is no longer a luxury but a needed utility.
Second, privacy was a “taken for granted” (24) benefit of STAR-C-TM.  All visits were conducted via a HIPPA-compliant videoconferencing link, but what the caregivers seemed to appreciate was that the consultant could only see them and little else.  This liberated them from having to conform to social mores, such as cleaning up the house (“You don’t see the mess behind me”) or making coffee for the consultant.  Some caregivers felt that having a stranger (the consultant) visit their home would have caused emotional stress, such as anxiety or suspiciousness on the care recipient’s part.  Further, consultant safety concerns (e.g., car travel, unfriendly dogs, unsafe neighborhoods) were non-existent.  On the other hand, there is value in seeing the full home environment and the telemedicine option did not allow this.  Despite the limited view, the caregivers reported feeling that the consultant cared about them and that the intervention was tailored to their needs.
The STAR-C interventions are customized to the needs of each family, (14, 15) and the STAR-C-TM caregivers liked this personalized approach with the one-on-one mode: “I like the focus…we’re not talking about everybody else.”   Further, not all caregivers prefer the group setting.(27)  The literature points to two phenomena that may interfere with group participation:  stigma by association and social anxiety.  Werner et al. (2008) found that caregivers experience stigma by association due to care recipient behaviors, and this stigma can curb caregivers’ desire to seek support.  Social anxiety may also play a role, with over 5% of older adults having clinically significant social anxiety.(29)  Thus, the one-on-one STAR-C-TM option may be alternative for those who feel uncomfortable, for whatever reason, in the group environment.
Caregivers reported feeling emotionally supported within the technological interface.  Empathetic engagement is an important concept in healthcare in that it promotes patient engagement.  This “digital empathy”(30) was evident within the STAR-C-TM intervention as this caregiver remarked about the consultant:  “I felt like I had a really good friend, and I really appreciated that.”  Of interest, many of the final STAR-C-TM sessions ended with a “digital hug” in which both the caregiver and the consultant mimed a hug.
Regarding Aim 2 (efficacy), we found significant changes in the frequency and reactivity to care-recipient behaviors, but no change in levels of depression.  In contrast, traditional STAR-C interventions have shown improvements in depression.(14, 15)  This may be due to our small sample size, and the fact that all telemedicine-administered post-tests were completed with 14 caregivers, thus capturing all the data.  This diverges from other community-based STAR-C interventions in which not all post-tests were mailed back.(14, 15)
We did not find any significant changes in the caregivers’ desire to place care recipients in long term care (Aim 3).  These findings are similar to McCurry et al.’s (2015) who found no significant change in caregiver’s likelihood of placing their care recipients after receiving the traditional STAR-C intervention.  The lack of change in our study may have been due to low levels of desire to place at the beginning of the intervention.  While the decision to place is multi-faceted, STAR-C-TM may have paradoxically provided support for this decision because it addresses caregiver health and encourages caregivers to seek respite care when needed.
As a pilot, there were limitations.  With the small sample size, it was not powered to generalize findings.  We did not do a post-intervention assessment of those who dropped out of the study, so we don’t know what these caregivers thought about the feasibility of the study.
We did not control for external support group participation because we wanted the STAR-C-TM intervention to occur pragmatically, within the day-to-day experiences of caregivers.  Additionally, some caregivers’ care recipients were clinic patients of the consultant, which could have influenced our findings.
Despite these limitations, our findings in this pilot study indicate that providing the STAR-C intervention via telemedicine is acceptable and beneficial for caregivers for those with ADRD.  The benefits of pilot studies are that they prime us for more elegant, larger studies.  This was indeed the case for STAR-C-TM, which laid the foundation for future work to assess fidelity and efficacy.  Our ultimate goal is to make this program available to any caregiver with a computer an Internet connection.

Funding
This study was funded by the National Institute on Aging (P30AG008017 & P30AG024978). Funding was also provided by the BUILD EXITO program.  Research reported in this publication was supported in part by the National Institute of General Medical Sciences of the National Institutes of Health Award Number UL1GM118964.  The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Direct all correspondence to Dr. Lindauer:  lindauer@ohsu.edu

Conflict of Interest
None.

 

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