REVIEW ARTICLE
Supporting dementia patients and their caregivers in daily life challenges: review of physical, cognitive and psychosocial intervention studies H. -G. Nehena and D. M. Hermannb a
Department of Geriatrics, Elisabeth Hospital Essen, Essen,Germany; and bDepartment of Neurology, University Hospital Essen, Essen, Germany
EUROPEAN JOURNAL OF NEUROLOGY
Keywords:
caregiver, cognitive therapy, external milieu, person-centred care, physical exercise, psychosocial support Received 7 March 2014 Accepted 26 May 2014 European Journal of Neurology 2015, 22: 246–252 doi:10.1111/ene.12535
Background and purpose: Dementia is associated with multiple daily life challenges that have a major impact for health outcome, affecting both the patients and their caregivers. In this review, the efficacy of physical, cognitive and psychosocial interventions in the treatment of dementia patients is evaluated, and how caregiver education and support may contribute to patient care is analysed. Results and conclusions: Due to the complex nature of cognitive and psychosocial interventions, their efficacy depends strongly on local settings. Thus, active components of these interventions are not always obvious, even in controlled randomized trials. Successful patient management includes (i) the safekeeping of basic support, (ii) the provision of a stable external milieu that is adjusted to the patients’ cognitive resources and (iii) the provision of multimodal therapeutic concepts that are closely adapted to the practical needs of the patients and caregivers.
Introduction Due to physical, cognitive and psychosocial constraints, patients suffering from dementia are particularly at risk for illness in home and hospital environments [1]. Respiratory and urinary tract infections are increased in dementia patients, as is the prevalence of neuropsychiatric disturbances, namely agitation, wandering and delirious states [2,3], resulting in an increased need of hospitalization in this patient group [4,5]. Once hospitalized, dementia patients are particularly predisposed to treatment complications (e.g. delirious states and falls) and unfavourable outcomes (i.e. nursing home referral, death) [4,5]. There is a major need for stabilizing dementia patients in their home environments, preventing physical illnesses, hospitalization and deterioration. Whilst pharmacological therapies were a key topic in the dementia field in recent years, much less Correspondence: D. M. Hermann, Department of Neurology, University Hospital Essen, Hufelandstr. 55, 45122 Essen, Germany (tel.: +49 201 723 2814; fax: +49 201 723 5534; e-mail: dirk. [email protected]).
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emphasis was placed on non-pharmacological interventions aimed at the physical, cognitive and psychosocial restitution of dementia patients. This is surprising, since dementia imposes multiple challenges that are related both to cognitive disturbances and physical health problems [1]. A major role in dementia care is attributed to the patients’ caregivers, mostly spouses or children, who are strongly challenged by their relative’s disease. The high load of supervision and care causes psychosocial distress both for the caregivers and patients that affects the patients’ health state. The neurologist is not well acquainted with these multiple challenges, given that the treatment of these most elderly patients was hitherto not a primary focus for clinical neurologists. This will change with the demographic transformation of European communities in the near future, considering the anticipated doubling of dementias during the next 20 years [6,7]. In view of the eminent importance of these daily life challenges, this review evaluates the efficacy of physical, cognitive and psychosocial interventions in the treatment of dementia patients, furthermore analysing
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how caregiver education and support may contribute to patient care. In the preparation of this review, an extensive literature search in PubMed (until February 2014) was performed, combining the key words ‘dementia’ and ‘demented’ with ‘basic support’, ‘feeding’, ‘nutrition’, ‘external milieu’, ‘milieu therapy’, ‘physical exercise’, ‘cognitive therapy’, ‘cognitive training’, cognitive rehabilitation’, ‘cognitive stimulation’, ‘person-centred care’, ‘caregiver’, ‘carer’, ‘care recipient’, ‘psychosocial education’, ‘psychosocial support’, ‘psychosocial counselling’, ‘reminiscence’, ‘self-management support’ and ‘respite care’. Considering the length restrictions of this journal and given that a number of well-structured meta-analyses and systematic reviews have become available in the recent past, this review integrated meta-analyses and systematic reviews wherever possible. This procedure allowed us to provide a comprehensive review with an acceptable number of references. The reader may use these references for indepth literature studies.
Challenges of complex non-pharmacological interventions A major problem of non-pharmacological healthcare studies is the complex nature of therapeutic interventions, which even in the presence of high levels of effectiveness makes it difficult to identify which active elements are responsible for treatment success [8]. In the management of dementia patients, the geriatrician or neurologist is confronted with the need for providing best possible care despite the fact that evidence is lacking in some fields. Based on the concept that dementia patients may suffer harm in hospital environments by multiple causes involving inadequate assessment, management and treatment, several levels have previously been identified at which patient care may be improved: patient levels, task levels, individual staff levels, team levels, environmental levels, organizational levels and institutional context levels [9]. Patient levels apply to the question whether patients are able to recognize if their care is directed to ‘helping them see what the hospital staff is doing, hear what is happening, move around, and satisfy sleeping, eating and drinking needs in an environment in which people talk to them and inform them what is going on’ [10]. Task levels involve the use of adequate cognitive examination methods and complication prevention strategies in an environment in which tasks and protocols are clearly defined and utile, and where necessary patient information is available in appropriate records [9]. The staff require training to recognize and deal with typical and a
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typical disease manifestations, comorbidities, as well as appropriate and inappropriate interventions in a multidisciplinary team in which leadership and teamworking are well balanced [9]. Besides environmental levels determined by the structure of hospital buildings and wards, bed management relates to the provision of continuity of care both during the hospital stay (e.g. by preventing ward moves and changes on the physician and nursing level) and during the transition from hospital to outpatient environments [9]. The therapeutic setting can best be handled in clinical environments that closely integrate dedicated hospital structures with specialized outpatient clinics and primary care structures [11].
Strategies of intervention In contrast to staff and team factors, as well as environmental, organizational and institutional context factors, which strongly depend on local conditions and structures and can be generalized only to a limited extent to other places or medical systems, patientdirected therapeutic interventions can be stringently evaluated in comparative studies. Thus, objective information about the efficacy of therapeutic interventions may be obtained. Therapeutic interventions can be subdivided into those providing basic support, modifying the external milieu, i.e. environment, and stimulating patient resources by physical, cognitive and psychosocial interventions. Basic support
Depending on their disease stage, dementia patients require basic support on a number of levels that include physical care and personal hygiene, as well as the satisfaction of hunger and thirst (Table 1). Patients suffering from dementia frequently exhibit nutritional deficits, which require compensation by assisted feeding or nutritional supplements. A recent meta-analysis revealed that levels of folate, vitamin A, vitamin B12, vitamin C and vitamin E are significantly reduced in the plasma of Alzheimer’s disease patients compared with age-adjusted control patients, whereas zinc and vitamin D were non-significantly altered [12]. Structured feeding programmes increased body weight and body mass index (BMI) in dementia patients according to a systematic review of 13 controlled studies, amongst which, however, only a single study was randomized [13]. Oral nutritional supplement drinks increased body weight and BMI and enhanced cognition in dementia patients according to a meta-analysis of 12 controlled studies [14].
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Table 1 Therapeutic interventions supporting dementia patients Concept
Definition and goal
Evidence
Basic support
Providing physical care and personal hygiene, as well as satisfaction of hunger and thirst. Relieving malnutrition states by structured feeding programmes or nutritional supplements
Modification of external milieu
Providing continuity to dementia patients by tying in with old habits or preferences. Establishing a space in which patients feel comfortable
Physical exercise
Challenging patients with physical exercise, aiming at stabilization of cognitive function and general health
Cognitive training and rehabilitation
Stimulating patients with cognitive tasks, aiming at improvement of cognitive performance (= cognitive training) or at attenuation of apparent real life deficits (= cognitive rehabilitation)
Cognitive stimulation
Providing general stimulation for attention, memory and thinking in a group setting by enjoyable activities
Person-centred psychosocial care
Maintaining person-hood in face of failing mental powers. Recognizing and strengthening the role of relationship. Utilizing remaining physical, emotional and cognitive abilities. Acknowledging emotions and responding to them
Levels of folate, vitamin A, vitamin B12, vitamin C and vitamin E are significantly reduced in the plasma of Alzheimer’s disease patients [12] Structured feeding programmes increased body weight and BMI in dementia patients according to a systematic review [13] Oral nutritional supplement drinks increased body weight, BMI and cognition in dementia patients according to a meta-analysis [14] Relaxing sensory stimulation reduced agitation in patients suffering from dementia in a systematic review, whereas social contact and activities, environmental modification and behavioural therapy had no effect [18]. Unfortunately, strategies aiming at influencing the external milieu of the patients were rarely examined in controlled studies. Their efficacy cannot finally be evaluated Physical exercise improved cognitive function and activities of daily life in dementia patients in a metaanalysis [20]. In one study within this meta-analysis, the caregiver burden was reduced by patient enrolment in an exercise programme. Physical exercise did not influence the patients’ challenging behaviours and depression Rigid cognitive training did not improve the cognition, mood and daily life activities of dementia patients according to a recent meta-analysis [21] Cognitive rehabilitation, which aims at the improvement of daily life activities in areas with apparent real life deficits, improved ratings in goal performance and satisfaction in the only larger (69 patients) controlled randomized study [22] Cognitive stimulation improved cognitive function in a meta-analysis [23]. Improvement of self-reported quality of life and well-being and staff ratings of communication and social interaction were also noted. No effects on mood, activities of daily living and challenging behaviours were found Person-centred care reduced agitation and improved mood in two cluster-randomized controlled studies and one randomized crossover study that included a total of 934 patients [26–28]. In one of these studies, quality of life was improved after both 4 and 8 months therapy [27]. An increased risk of falls was noted in one study [26]
Modification of external milieu
Challenging behaviours, namely agitation, develop in response to external triggers, to which the patient cannot respond in an adequate way particularly in the advanced stages of dementia. In view of limited patient resources, external, i.e. milieu, factors are an important target within the treatment of behavioural abnormalities [15]. Milieu therapy aims at providing continuity to dementia patients by tying in with old habits or preferences, establishing a space in which the patients feel comfortable [16] (Table 1). Core elements are a stable external environment with a structured day rhythm [17]. An important component of
the patients’ interactions with their environment relates to sensory stimuli. In a systematic review of 14 randomized studies examining the effects of different types of psychosocial intervention on agitation in dementia patients, only sensory stimulation aimed at inducing relaxation was effective in reducing agitated behaviours, whereas social contact and activities, environmental modification and behavioural therapy had no effect [18]. Unfortunately, strategies aimed at influencing the external milieu of dementia patients were so far mostly examined in observation studies without control groups [19]. Thus, their efficacy cannot finally be evaluated from an evidence-based view.
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Physical exercise
In dementia patients, physical exercise aims at stabilizing cognitive function and general health (Table 1). According to a recent Cochrane meta-analysis including eight randomized controlled trials, in which 329 dementia patients were allocated to exercise programmes or control groups (usual care or social contact/activities), exercise programmes improved cognitive functioning (standard mean difference 0.55; 95% confidence interval 0.02–1.09) and activities of daily life (0.68; 0.08–1.27) [20]. Yet, due to the heterogeneity of the trials, the authors claimed that their findings should be interpreted with caution. In one study with 40 patients within this meta-analysis, the caregiver burden was reduced by enrolment of the demented family members in an exercise programme ( 15.3; 24.7 to 5.9). Yet, exercise did not influence the patients’ challenging behaviours ( 0.60; 4.22– 3.02) and depression ( 0.14; 0.36–0.07) in the metaanalysis [20]. Cognitive training and rehabilitation
Compared with physical exercise, the evidence regarding effects of cognitive training and rehabilitation is still less compelling. Whilst undirected cognitive training did not improve the cognition, mood and daily life activities of patients suffering from mild or moderate dementia according to a recent meta-analysis of 11 randomized controlled trials [21], cognitive rehabilitation, which aims at the improvement of daily life activities in areas with apparent deficits in real life, improved ratings in goal performance and satisfaction in the only larger (69 patients) controlled randomized study [22] (Table 1). The authors of the meta-analysis concluded that further well-designed studies are required to obtain more definite evidence about the efficacy of cognitive rehabilitation in dementia patients. Cognitive stimulation
Cognitive stimulation, defined as enjoyable activities providing general stimulation for attention, memory and thinking in a group setting, improved cognitive function at the end of the treatment period in a metaanalysis of 15 randomized controlled trials (standard mean difference 0.41; 95% confidence interval 0.25– 0.57), with consistent benefits persisting after 1 or 3 months [23] (Table 1). Improvement of self-reported quality of life and well-being (0.38; 0.11–0.65) and staff ratings of communication and social interaction (0.44; 0.17–0.71) were also noted. No effects on mood,
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activities of daily living or challenging behaviours were reported. Although the above studies were performed in community environments, their results can easily be applied to hospital settings. Specialized dementia wards and memory clinics offer a unique possibility of integrating physical, psychosocial and cognitive interventions into hospital settings, allowing the patients to adapt to their environment and create trust in their physicians, nurses and therapists. Such environments protect the patients from complications and unfavourable outcomes [1]. Person-centred psychosocial care
Dementia care should aim at maintaining person-hood in the face of failing mental powers according to concepts by Kitwood [24]. Attention to person-hood includes recognition of the central role of relationship, the uniqueness of persons and the fact of our embodiment [24]. From this perspective, therapeutic concepts may cause damage when losing sight of the patient as a person. Person-centred care focuses on remaining physical, emotional and cognitive abilities, acknowledging emotions and responding to them (the socalled concept of validation) [25]. Within the patient’s environment, his relatives, particularly the caregivers, play a very important role. In dementia, failing cognitive abilities result in the personalization of patient care, which offers opportunities for patient stabilization via shared decision-making [25]. Effects of person-centred care or dementia care mapping, which is an evaluation and observation concept developed for the optimization of nursing care, have been compared with usual care in a cluster-randomized controlled trial, Caring for Aged Dementia Care Resident Study (CADRES), in which 289 residents were randomly assigned to 15 residential care homes in Australia and New Zealand [26]. Relative to usual care, agitation was significantly reduced after 4 months of person-centred care (mean difference 13.6; 3.3–23.9) or dementia care mapping (10.9; 0.7– 21.1). Compared with usual care, dementia care mapping reduced the risk of falls (0.24; 0.08–0.40), whereas person-centred care slightly increased fall risk (0.15; 0.02–0.28). Besides, no other significant changes were noted. Improvement of agitation and mood has more recently been shown in a cluster-randomized controlled study including 601 patients with dementia in 38 Australian residential care homes, called Personcentred Residential Care and Environment for People with Dementia (PerCEN) [27], and a randomized crossover study including 44 patients with dementia in
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nine Australian residential care homes [28], in which person-centred care or Montessori-based one-to-one interaction programmes, respectively, were delivered. In the first study, quality of life improvements were also noted 4 and 8 months after the initiation of the intervention [27]. In view of these reproducible findings, evidence for the efficacy of person-centred therapeutic interventions is solid. Based on observations in CADRES [26], possible side effects, specifically falls, should carefully be considered in the implementation of intervention programmes.
Supporting caregivers of dementia patients Role of caregivers
Dementia strongly affects the daily life of caregivers particularly in advanced stages of the disease, when patients require frequent, sometimes continuous, supervision, physical care and support. The caregivers are not rarely over-challenged in a setting in which they are no longer able to communicate with their relatives in a rational way. The discontent induces emotional responses, such as sadness, anxiety and anger, in the caregivers and affects their ability to provide adequate support. A major challenge is the sandwich situation of many caregivers – typically children of the patients – who still have to carry parent responsibilities in interaction with their own children. On the other hand, elderly spouses or partners may not be able to provide unrestricted support and care due to their own physical or mental illnesses. In this setting,
professional assistance and help are needed and in many situations nursing home institutionalization cannot be circumvented because the home situation becomes destabilized. Psychosocial education and support
The support of caregivers was assessed already in the 1990s in a randomized controlled trial that included 96 persons below 80 years with mild to moderate dementia in the psychiatry unit of an Australian teaching hospital [29]. All patients received a 10-day structured memory retraining and activity programme. Caregivers received a structured, residential 10-day training programme, which started either immediately (immediate group) or with 6 months’ delay (wait-list group) and was boosted by follow-ups and telephone conferences over 12 months. Sixty-four per cent of patients whose caregivers were in the immediate training group, 53% of wait-list group patients and 70% of control patients died during the follow-up of approximately 8 years [29]. During that time, nursing home admission had occurred in 79% of immediate training, 83% of the delayed training and 90% of the control group. Eight-year survival analysis indicated that patients whose caregivers received training stayed at home significantly longer (P = 0.037) and tended to live longer (P = 0.080) than control patients (Table 2). In the community setting, beneficial effects of psychosocial interventions amongst caregivers were confirmed in the more recent past in two randomized
Table 2 Therapeutic interventions supporting caregivers of dementia patients Concept
Definition and goal
Evidence
Psychosocial education and support
Providing self-management resources to caregivers (most often spouses or children) by psychosocial education, training and/or counselling, either in formalized programmes or caregiver support groups
Respite care
Reducing caregiver burden and improving patient wellbeing by in-home one-on-one substitute care, referral of care recipients to community support programme or referral of care recipients to short-term nursing home
In the hospital setting, structured caregiver training delayed nursing home admission and in tendency increased survival of dementia patients over an observation period of 8 years in a randomized controlled study [29] In the community setting, occupational therapy to caregivers significantly improved quality of life of dementia patients and caregivers and improved the mood and health status of caregivers [30,31] In the community setting, psychosocial counselling reduced subjective burden, depression and sleep problems of caregivers [32] The participation of caregivers in a group education programme did not improve self-reported quality of life of dementia patients and psychological distress of the carers [34] Providing an interactive voice telephone support system did not affect bother, depression and anxiety of caregivers [36] Respite care improved the care recipients’ health state and postponed entry into long-term care units according to some, but not other studies [37] In view of the heterogeneity of data, a recent meta-analysis could not identify any reduction of caregiver burden by respite care [39]
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controlled trials examining 135 patients with mild to moderate dementia, in which 10 1-h individual occupational therapy sessions or no therapy sessions were administered over 5 weeks [30,31], and 95 patients with moderate dementia, in which 8 1-h individual psychosocial counselling sessions (by master or equivalent in education, psychology or social work) or no counselling sessions were offered over 8 weeks [32] (Table 2). In the first study, occupational therapy to caregivers significantly improved both patients’ quality of life (improvement by 0.8 points in the Dementia Quality of life Instrument; 95% confidence interval 0.6–1.0) and caregivers’ quality of life (by 0.7 points; 0.5–0.9 points) after a follow-up of 6 weeks, as it did after 12 weeks, and improved the caregivers’ mood and health status, as assessed by questionnaires [30,31]. In the second study, caregiver counselling reduced subjective burden, depression and sleep problems of caregivers over an observation period of 2–6 months [32]. Economic analysis revealed that occupational therapy was highly cost-effective, since the financial expenditures for general practitioner and hospital visits were reduced for patients with carers who received therapeutic interventions [33]. In a controlled trial of caregivers of 488 patients with mild to moderate dementia, who were randomized to a 12-week support programme consisting of weekly group reminiscence, i.e. education sessions, followed by monthly maintenance sessions for a further 7 months, or usual care, the participation in the support programme did not influence self-reported quality of life of the dementia patient and psychological distress of the carer, which were the primary outcomes of the study [34] (Table 2). Similarly, autobiographical memory and activities of daily living of the patient, carer stress for the carer and mood, as well as relationship quality and service use and costs for both parties, which were secondary outcomes of the study, were not improved [34]. Additional studies evaluating structured education and self-management support programmes are ongoing. The most recent meta-analysis of randomized controlled trials evaluating psychosocial education and support programmes found that caregiver support improved the caregivers’ psychological well-being (Hedge’s g = 0.44; 0.73 to 0.15), depression ( 0.40; 0.72 to 0.08), burden ( 0.23; 0.33 to 0.13) and social outcomes (0.40; 0.09–0.71) [35]. In contrast to face to face psychosocial education and support, the 12-month access to an interactive voice telephone support system did not have any effect on bother, depression and anxiety scores of caregivers after 18 months [36].
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Respite care
In addition to psychosocial assistance and support, respite care for caregivers, as in-home one-on-one care for a couple of hours per day, referral of care recipients to a community support programme or referral of care recipients to a short-term nursing home, might have beneficial effects on the care recipients’ health state and possibly postpone the entry into long-term care units according to some, but not other, studies (summarized in [37]; Table 2). Existing studies were highly heterogeneous regarding interventions, durations, outcomes and control groups and contained major weaknesses. For example, in the largest favourable study [38], control subjects revealed a higher use of respite services than respite intervention patients. Following re-analysis of outcomes, a recent Cochrane meta-analysis found no significant effects of respite care compared with no respite care on any caregiver variable [39]. Besides stabilizing the patients’ quality of life and course of disease in the early stages of dementia and improving the caregivers’ psychosocial burden and health status, the question whether caregiver support ameliorates patient care also in advanced dementia is currently examined in controlled studies. Indeed, intervention studies suggested that psychosocial education of caregivers reduces agitation and anxiety of patients also in advanced dementia [40] and enhances the patients’ end-of-life care (e.g. decisions on hospitalization, antibiotics or percutaneous endoscopic gastroscopy) [41]. From end-of-life studies, there is meanwhile convincing evidence that caregiver education might prevent pathological mourning even after the patients’ death [42]. Hence, dementia wards and memory clinics should integrate caregiver education and support activities into therapeutic concepts. In an own geriatrics department running a dementia ward with day clinic and outpatient memory clinic for more than 20 years, hospital activities are complemented by 3 weekly caregiver groups headed by staff members. A problem in the implementation of caregiver groups is the lack of remuneration by health insurances.
Need for multimodal treatment concepts Considering the multifaceted deficits of dementia patients in physical health, cognitive performance and psychosocial communication, dementia patients have a strong need for multimodal treatment concepts addressing all these aspects in a comprehensive way. The dimensions affected, i.e. physical health, cognition and psychosocial communication, reflect key human values. Their optimization is a categorical imperative for those involved in medical care.
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In contrast to pharmacological therapies, the treatment success of non-pharmacological interventions (specifically of interventions targeting cognition and psychosocial communication) strongly depends on local settings that are influenced by confounding factors related to hospital or primary care environments, working equipment, the skills and motivation of the staff, as well as the ability of healthcare providers to provide continuous support in the case of problems arising in the home environment. Active components of treatment cannot always be identified in such complex settings [8]. This observation explains why in comparison to other neurological fields therapeutic evidence is less profound. Compared with pharmacological therapies, research activities in the field of physical, cognitive or psychosocial interventions are less driven by mercantile interests. For this reason, they were less intensively promoted over many years. Ethical aspects in this field may nonetheless arise from stakeholder interests, which are not easy to control, considering the multiple players involved in patient care and the fact that the existence or non-existence of efficacy data has profound consequences for the perception and justification of individual therapeutic groups. Thorough discussion between
physicians, researchers and therapeutic group representatives is needed to counteract research biasing.
Conclusions There has been emerging evidence in recent years demonstrating that interventions targeting the patients’ basic support, external environment, physical, cognitive and psychosocial activity are effective. In addition to patient-centred approaches, evidence for the efficacy of caregiver-centred interventions was provided. There is a need for developing integrative concepts that bring together physical, cognitive and psychosocial strategies. Therapeutic interventions are probably most effective, when adapted to the patients’ practical needs as well as to the needs of the carers. Neurologists have to develop skills in handling the multifaceted needs of dementia patients. These skills are critical for the well-being of our patients.
Disclosure of conflicts of interest The authors declare no financial or other conflicts of interest.
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37. Medical Advisory Secretariat. Caregiver- and patientdirected interventions for dementia: an evidence-based analysis. Ont Health Technol Assess Ser 2008; 8: 1–98. 38. Lawton MP, Brody EM, Saperstein AR. A controlled study of respite service for caregivers of Alzheimer’s patients. Gerontologist 1989; 29: 8–16. 39. Maayan N, Soares-Weiser K, Lee H. Respite care for people with dementia and their carers. Cochrane Database Syst Rev 2014; 1: CD004396. 40. Haupt M, Karger A, Baumg€ artner D, Kuminoti D, J€ anner M, Schneider F. Verbesserung von Unruhezust€ anden und Angst bei Demenzkranken nach psychoedukativer Gruppenarbeit mit pflegenden Angeh€ origen. Fortschr Neurol Psychiatr 2000; 68: 216–223. 41. Sampson EL, Jones L, Thune-Boyle IC, et al. Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliat Med 2011; 25: 197–209. 42. F€ orstl H, Bickel H, Kurz A, Borasio GD. Sterben mit Demenz. Fortschr Neurol Psychiatr 2010; 78: 203–212.
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Supporting dementia patients and their caregivers in daily life challenges: review of physical, cognitive and psychosocial intervention studies H. -G. Nehena and D. M. Hermannb a
Department of Geriatrics, Elisabeth Hospital Essen, Essen,Germany; and bDepartment of Neurology, University Hospital Essen, Essen, Germany
EUROPEAN JOURNAL OF NEUROLOGY
Keywords:
caregiver, cognitive therapy, external milieu, person-centred care, physical exercise, psychosocial support Received 7 March 2014 Accepted 26 May 2014 European Journal of Neurology 2015, 22: 246–252 doi:10.1111/ene.12535
Background and purpose: Dementia is associated with multiple daily life challenges that have a major impact for health outcome, affecting both the patients and their caregivers. In this review, the efficacy of physical, cognitive and psychosocial interventions in the treatment of dementia patients is evaluated, and how caregiver education and support may contribute to patient care is analysed. Results and conclusions: Due to the complex nature of cognitive and psychosocial interventions, their efficacy depends strongly on local settings. Thus, active components of these interventions are not always obvious, even in controlled randomized trials. Successful patient management includes (i) the safekeeping of basic support, (ii) the provision of a stable external milieu that is adjusted to the patients’ cognitive resources and (iii) the provision of multimodal therapeutic concepts that are closely adapted to the practical needs of the patients and caregivers.
Introduction Due to physical, cognitive and psychosocial constraints, patients suffering from dementia are particularly at risk for illness in home and hospital environments [1]. Respiratory and urinary tract infections are increased in dementia patients, as is the prevalence of neuropsychiatric disturbances, namely agitation, wandering and delirious states [2,3], resulting in an increased need of hospitalization in this patient group [4,5]. Once hospitalized, dementia patients are particularly predisposed to treatment complications (e.g. delirious states and falls) and unfavourable outcomes (i.e. nursing home referral, death) [4,5]. There is a major need for stabilizing dementia patients in their home environments, preventing physical illnesses, hospitalization and deterioration. Whilst pharmacological therapies were a key topic in the dementia field in recent years, much less Correspondence: D. M. Hermann, Department of Neurology, University Hospital Essen, Hufelandstr. 55, 45122 Essen, Germany (tel.: +49 201 723 2814; fax: +49 201 723 5534; e-mail: dirk. [email protected]).
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emphasis was placed on non-pharmacological interventions aimed at the physical, cognitive and psychosocial restitution of dementia patients. This is surprising, since dementia imposes multiple challenges that are related both to cognitive disturbances and physical health problems [1]. A major role in dementia care is attributed to the patients’ caregivers, mostly spouses or children, who are strongly challenged by their relative’s disease. The high load of supervision and care causes psychosocial distress both for the caregivers and patients that affects the patients’ health state. The neurologist is not well acquainted with these multiple challenges, given that the treatment of these most elderly patients was hitherto not a primary focus for clinical neurologists. This will change with the demographic transformation of European communities in the near future, considering the anticipated doubling of dementias during the next 20 years [6,7]. In view of the eminent importance of these daily life challenges, this review evaluates the efficacy of physical, cognitive and psychosocial interventions in the treatment of dementia patients, furthermore analysing
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how caregiver education and support may contribute to patient care. In the preparation of this review, an extensive literature search in PubMed (until February 2014) was performed, combining the key words ‘dementia’ and ‘demented’ with ‘basic support’, ‘feeding’, ‘nutrition’, ‘external milieu’, ‘milieu therapy’, ‘physical exercise’, ‘cognitive therapy’, ‘cognitive training’, cognitive rehabilitation’, ‘cognitive stimulation’, ‘person-centred care’, ‘caregiver’, ‘carer’, ‘care recipient’, ‘psychosocial education’, ‘psychosocial support’, ‘psychosocial counselling’, ‘reminiscence’, ‘self-management support’ and ‘respite care’. Considering the length restrictions of this journal and given that a number of well-structured meta-analyses and systematic reviews have become available in the recent past, this review integrated meta-analyses and systematic reviews wherever possible. This procedure allowed us to provide a comprehensive review with an acceptable number of references. The reader may use these references for indepth literature studies.
Challenges of complex non-pharmacological interventions A major problem of non-pharmacological healthcare studies is the complex nature of therapeutic interventions, which even in the presence of high levels of effectiveness makes it difficult to identify which active elements are responsible for treatment success [8]. In the management of dementia patients, the geriatrician or neurologist is confronted with the need for providing best possible care despite the fact that evidence is lacking in some fields. Based on the concept that dementia patients may suffer harm in hospital environments by multiple causes involving inadequate assessment, management and treatment, several levels have previously been identified at which patient care may be improved: patient levels, task levels, individual staff levels, team levels, environmental levels, organizational levels and institutional context levels [9]. Patient levels apply to the question whether patients are able to recognize if their care is directed to ‘helping them see what the hospital staff is doing, hear what is happening, move around, and satisfy sleeping, eating and drinking needs in an environment in which people talk to them and inform them what is going on’ [10]. Task levels involve the use of adequate cognitive examination methods and complication prevention strategies in an environment in which tasks and protocols are clearly defined and utile, and where necessary patient information is available in appropriate records [9]. The staff require training to recognize and deal with typical and a
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typical disease manifestations, comorbidities, as well as appropriate and inappropriate interventions in a multidisciplinary team in which leadership and teamworking are well balanced [9]. Besides environmental levels determined by the structure of hospital buildings and wards, bed management relates to the provision of continuity of care both during the hospital stay (e.g. by preventing ward moves and changes on the physician and nursing level) and during the transition from hospital to outpatient environments [9]. The therapeutic setting can best be handled in clinical environments that closely integrate dedicated hospital structures with specialized outpatient clinics and primary care structures [11].
Strategies of intervention In contrast to staff and team factors, as well as environmental, organizational and institutional context factors, which strongly depend on local conditions and structures and can be generalized only to a limited extent to other places or medical systems, patientdirected therapeutic interventions can be stringently evaluated in comparative studies. Thus, objective information about the efficacy of therapeutic interventions may be obtained. Therapeutic interventions can be subdivided into those providing basic support, modifying the external milieu, i.e. environment, and stimulating patient resources by physical, cognitive and psychosocial interventions. Basic support
Depending on their disease stage, dementia patients require basic support on a number of levels that include physical care and personal hygiene, as well as the satisfaction of hunger and thirst (Table 1). Patients suffering from dementia frequently exhibit nutritional deficits, which require compensation by assisted feeding or nutritional supplements. A recent meta-analysis revealed that levels of folate, vitamin A, vitamin B12, vitamin C and vitamin E are significantly reduced in the plasma of Alzheimer’s disease patients compared with age-adjusted control patients, whereas zinc and vitamin D were non-significantly altered [12]. Structured feeding programmes increased body weight and body mass index (BMI) in dementia patients according to a systematic review of 13 controlled studies, amongst which, however, only a single study was randomized [13]. Oral nutritional supplement drinks increased body weight and BMI and enhanced cognition in dementia patients according to a meta-analysis of 12 controlled studies [14].
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Table 1 Therapeutic interventions supporting dementia patients Concept
Definition and goal
Evidence
Basic support
Providing physical care and personal hygiene, as well as satisfaction of hunger and thirst. Relieving malnutrition states by structured feeding programmes or nutritional supplements
Modification of external milieu
Providing continuity to dementia patients by tying in with old habits or preferences. Establishing a space in which patients feel comfortable
Physical exercise
Challenging patients with physical exercise, aiming at stabilization of cognitive function and general health
Cognitive training and rehabilitation
Stimulating patients with cognitive tasks, aiming at improvement of cognitive performance (= cognitive training) or at attenuation of apparent real life deficits (= cognitive rehabilitation)
Cognitive stimulation
Providing general stimulation for attention, memory and thinking in a group setting by enjoyable activities
Person-centred psychosocial care
Maintaining person-hood in face of failing mental powers. Recognizing and strengthening the role of relationship. Utilizing remaining physical, emotional and cognitive abilities. Acknowledging emotions and responding to them
Levels of folate, vitamin A, vitamin B12, vitamin C and vitamin E are significantly reduced in the plasma of Alzheimer’s disease patients [12] Structured feeding programmes increased body weight and BMI in dementia patients according to a systematic review [13] Oral nutritional supplement drinks increased body weight, BMI and cognition in dementia patients according to a meta-analysis [14] Relaxing sensory stimulation reduced agitation in patients suffering from dementia in a systematic review, whereas social contact and activities, environmental modification and behavioural therapy had no effect [18]. Unfortunately, strategies aiming at influencing the external milieu of the patients were rarely examined in controlled studies. Their efficacy cannot finally be evaluated Physical exercise improved cognitive function and activities of daily life in dementia patients in a metaanalysis [20]. In one study within this meta-analysis, the caregiver burden was reduced by patient enrolment in an exercise programme. Physical exercise did not influence the patients’ challenging behaviours and depression Rigid cognitive training did not improve the cognition, mood and daily life activities of dementia patients according to a recent meta-analysis [21] Cognitive rehabilitation, which aims at the improvement of daily life activities in areas with apparent real life deficits, improved ratings in goal performance and satisfaction in the only larger (69 patients) controlled randomized study [22] Cognitive stimulation improved cognitive function in a meta-analysis [23]. Improvement of self-reported quality of life and well-being and staff ratings of communication and social interaction were also noted. No effects on mood, activities of daily living and challenging behaviours were found Person-centred care reduced agitation and improved mood in two cluster-randomized controlled studies and one randomized crossover study that included a total of 934 patients [26–28]. In one of these studies, quality of life was improved after both 4 and 8 months therapy [27]. An increased risk of falls was noted in one study [26]
Modification of external milieu
Challenging behaviours, namely agitation, develop in response to external triggers, to which the patient cannot respond in an adequate way particularly in the advanced stages of dementia. In view of limited patient resources, external, i.e. milieu, factors are an important target within the treatment of behavioural abnormalities [15]. Milieu therapy aims at providing continuity to dementia patients by tying in with old habits or preferences, establishing a space in which the patients feel comfortable [16] (Table 1). Core elements are a stable external environment with a structured day rhythm [17]. An important component of
the patients’ interactions with their environment relates to sensory stimuli. In a systematic review of 14 randomized studies examining the effects of different types of psychosocial intervention on agitation in dementia patients, only sensory stimulation aimed at inducing relaxation was effective in reducing agitated behaviours, whereas social contact and activities, environmental modification and behavioural therapy had no effect [18]. Unfortunately, strategies aimed at influencing the external milieu of dementia patients were so far mostly examined in observation studies without control groups [19]. Thus, their efficacy cannot finally be evaluated from an evidence-based view.
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Physical exercise
In dementia patients, physical exercise aims at stabilizing cognitive function and general health (Table 1). According to a recent Cochrane meta-analysis including eight randomized controlled trials, in which 329 dementia patients were allocated to exercise programmes or control groups (usual care or social contact/activities), exercise programmes improved cognitive functioning (standard mean difference 0.55; 95% confidence interval 0.02–1.09) and activities of daily life (0.68; 0.08–1.27) [20]. Yet, due to the heterogeneity of the trials, the authors claimed that their findings should be interpreted with caution. In one study with 40 patients within this meta-analysis, the caregiver burden was reduced by enrolment of the demented family members in an exercise programme ( 15.3; 24.7 to 5.9). Yet, exercise did not influence the patients’ challenging behaviours ( 0.60; 4.22– 3.02) and depression ( 0.14; 0.36–0.07) in the metaanalysis [20]. Cognitive training and rehabilitation
Compared with physical exercise, the evidence regarding effects of cognitive training and rehabilitation is still less compelling. Whilst undirected cognitive training did not improve the cognition, mood and daily life activities of patients suffering from mild or moderate dementia according to a recent meta-analysis of 11 randomized controlled trials [21], cognitive rehabilitation, which aims at the improvement of daily life activities in areas with apparent deficits in real life, improved ratings in goal performance and satisfaction in the only larger (69 patients) controlled randomized study [22] (Table 1). The authors of the meta-analysis concluded that further well-designed studies are required to obtain more definite evidence about the efficacy of cognitive rehabilitation in dementia patients. Cognitive stimulation
Cognitive stimulation, defined as enjoyable activities providing general stimulation for attention, memory and thinking in a group setting, improved cognitive function at the end of the treatment period in a metaanalysis of 15 randomized controlled trials (standard mean difference 0.41; 95% confidence interval 0.25– 0.57), with consistent benefits persisting after 1 or 3 months [23] (Table 1). Improvement of self-reported quality of life and well-being (0.38; 0.11–0.65) and staff ratings of communication and social interaction (0.44; 0.17–0.71) were also noted. No effects on mood,
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activities of daily living or challenging behaviours were reported. Although the above studies were performed in community environments, their results can easily be applied to hospital settings. Specialized dementia wards and memory clinics offer a unique possibility of integrating physical, psychosocial and cognitive interventions into hospital settings, allowing the patients to adapt to their environment and create trust in their physicians, nurses and therapists. Such environments protect the patients from complications and unfavourable outcomes [1]. Person-centred psychosocial care
Dementia care should aim at maintaining person-hood in the face of failing mental powers according to concepts by Kitwood [24]. Attention to person-hood includes recognition of the central role of relationship, the uniqueness of persons and the fact of our embodiment [24]. From this perspective, therapeutic concepts may cause damage when losing sight of the patient as a person. Person-centred care focuses on remaining physical, emotional and cognitive abilities, acknowledging emotions and responding to them (the socalled concept of validation) [25]. Within the patient’s environment, his relatives, particularly the caregivers, play a very important role. In dementia, failing cognitive abilities result in the personalization of patient care, which offers opportunities for patient stabilization via shared decision-making [25]. Effects of person-centred care or dementia care mapping, which is an evaluation and observation concept developed for the optimization of nursing care, have been compared with usual care in a cluster-randomized controlled trial, Caring for Aged Dementia Care Resident Study (CADRES), in which 289 residents were randomly assigned to 15 residential care homes in Australia and New Zealand [26]. Relative to usual care, agitation was significantly reduced after 4 months of person-centred care (mean difference 13.6; 3.3–23.9) or dementia care mapping (10.9; 0.7– 21.1). Compared with usual care, dementia care mapping reduced the risk of falls (0.24; 0.08–0.40), whereas person-centred care slightly increased fall risk (0.15; 0.02–0.28). Besides, no other significant changes were noted. Improvement of agitation and mood has more recently been shown in a cluster-randomized controlled study including 601 patients with dementia in 38 Australian residential care homes, called Personcentred Residential Care and Environment for People with Dementia (PerCEN) [27], and a randomized crossover study including 44 patients with dementia in
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nine Australian residential care homes [28], in which person-centred care or Montessori-based one-to-one interaction programmes, respectively, were delivered. In the first study, quality of life improvements were also noted 4 and 8 months after the initiation of the intervention [27]. In view of these reproducible findings, evidence for the efficacy of person-centred therapeutic interventions is solid. Based on observations in CADRES [26], possible side effects, specifically falls, should carefully be considered in the implementation of intervention programmes.
Supporting caregivers of dementia patients Role of caregivers
Dementia strongly affects the daily life of caregivers particularly in advanced stages of the disease, when patients require frequent, sometimes continuous, supervision, physical care and support. The caregivers are not rarely over-challenged in a setting in which they are no longer able to communicate with their relatives in a rational way. The discontent induces emotional responses, such as sadness, anxiety and anger, in the caregivers and affects their ability to provide adequate support. A major challenge is the sandwich situation of many caregivers – typically children of the patients – who still have to carry parent responsibilities in interaction with their own children. On the other hand, elderly spouses or partners may not be able to provide unrestricted support and care due to their own physical or mental illnesses. In this setting,
professional assistance and help are needed and in many situations nursing home institutionalization cannot be circumvented because the home situation becomes destabilized. Psychosocial education and support
The support of caregivers was assessed already in the 1990s in a randomized controlled trial that included 96 persons below 80 years with mild to moderate dementia in the psychiatry unit of an Australian teaching hospital [29]. All patients received a 10-day structured memory retraining and activity programme. Caregivers received a structured, residential 10-day training programme, which started either immediately (immediate group) or with 6 months’ delay (wait-list group) and was boosted by follow-ups and telephone conferences over 12 months. Sixty-four per cent of patients whose caregivers were in the immediate training group, 53% of wait-list group patients and 70% of control patients died during the follow-up of approximately 8 years [29]. During that time, nursing home admission had occurred in 79% of immediate training, 83% of the delayed training and 90% of the control group. Eight-year survival analysis indicated that patients whose caregivers received training stayed at home significantly longer (P = 0.037) and tended to live longer (P = 0.080) than control patients (Table 2). In the community setting, beneficial effects of psychosocial interventions amongst caregivers were confirmed in the more recent past in two randomized
Table 2 Therapeutic interventions supporting caregivers of dementia patients Concept
Definition and goal
Evidence
Psychosocial education and support
Providing self-management resources to caregivers (most often spouses or children) by psychosocial education, training and/or counselling, either in formalized programmes or caregiver support groups
Respite care
Reducing caregiver burden and improving patient wellbeing by in-home one-on-one substitute care, referral of care recipients to community support programme or referral of care recipients to short-term nursing home
In the hospital setting, structured caregiver training delayed nursing home admission and in tendency increased survival of dementia patients over an observation period of 8 years in a randomized controlled study [29] In the community setting, occupational therapy to caregivers significantly improved quality of life of dementia patients and caregivers and improved the mood and health status of caregivers [30,31] In the community setting, psychosocial counselling reduced subjective burden, depression and sleep problems of caregivers [32] The participation of caregivers in a group education programme did not improve self-reported quality of life of dementia patients and psychological distress of the carers [34] Providing an interactive voice telephone support system did not affect bother, depression and anxiety of caregivers [36] Respite care improved the care recipients’ health state and postponed entry into long-term care units according to some, but not other studies [37] In view of the heterogeneity of data, a recent meta-analysis could not identify any reduction of caregiver burden by respite care [39]
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controlled trials examining 135 patients with mild to moderate dementia, in which 10 1-h individual occupational therapy sessions or no therapy sessions were administered over 5 weeks [30,31], and 95 patients with moderate dementia, in which 8 1-h individual psychosocial counselling sessions (by master or equivalent in education, psychology or social work) or no counselling sessions were offered over 8 weeks [32] (Table 2). In the first study, occupational therapy to caregivers significantly improved both patients’ quality of life (improvement by 0.8 points in the Dementia Quality of life Instrument; 95% confidence interval 0.6–1.0) and caregivers’ quality of life (by 0.7 points; 0.5–0.9 points) after a follow-up of 6 weeks, as it did after 12 weeks, and improved the caregivers’ mood and health status, as assessed by questionnaires [30,31]. In the second study, caregiver counselling reduced subjective burden, depression and sleep problems of caregivers over an observation period of 2–6 months [32]. Economic analysis revealed that occupational therapy was highly cost-effective, since the financial expenditures for general practitioner and hospital visits were reduced for patients with carers who received therapeutic interventions [33]. In a controlled trial of caregivers of 488 patients with mild to moderate dementia, who were randomized to a 12-week support programme consisting of weekly group reminiscence, i.e. education sessions, followed by monthly maintenance sessions for a further 7 months, or usual care, the participation in the support programme did not influence self-reported quality of life of the dementia patient and psychological distress of the carer, which were the primary outcomes of the study [34] (Table 2). Similarly, autobiographical memory and activities of daily living of the patient, carer stress for the carer and mood, as well as relationship quality and service use and costs for both parties, which were secondary outcomes of the study, were not improved [34]. Additional studies evaluating structured education and self-management support programmes are ongoing. The most recent meta-analysis of randomized controlled trials evaluating psychosocial education and support programmes found that caregiver support improved the caregivers’ psychological well-being (Hedge’s g = 0.44; 0.73 to 0.15), depression ( 0.40; 0.72 to 0.08), burden ( 0.23; 0.33 to 0.13) and social outcomes (0.40; 0.09–0.71) [35]. In contrast to face to face psychosocial education and support, the 12-month access to an interactive voice telephone support system did not have any effect on bother, depression and anxiety scores of caregivers after 18 months [36].
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Respite care
In addition to psychosocial assistance and support, respite care for caregivers, as in-home one-on-one care for a couple of hours per day, referral of care recipients to a community support programme or referral of care recipients to a short-term nursing home, might have beneficial effects on the care recipients’ health state and possibly postpone the entry into long-term care units according to some, but not other, studies (summarized in [37]; Table 2). Existing studies were highly heterogeneous regarding interventions, durations, outcomes and control groups and contained major weaknesses. For example, in the largest favourable study [38], control subjects revealed a higher use of respite services than respite intervention patients. Following re-analysis of outcomes, a recent Cochrane meta-analysis found no significant effects of respite care compared with no respite care on any caregiver variable [39]. Besides stabilizing the patients’ quality of life and course of disease in the early stages of dementia and improving the caregivers’ psychosocial burden and health status, the question whether caregiver support ameliorates patient care also in advanced dementia is currently examined in controlled studies. Indeed, intervention studies suggested that psychosocial education of caregivers reduces agitation and anxiety of patients also in advanced dementia [40] and enhances the patients’ end-of-life care (e.g. decisions on hospitalization, antibiotics or percutaneous endoscopic gastroscopy) [41]. From end-of-life studies, there is meanwhile convincing evidence that caregiver education might prevent pathological mourning even after the patients’ death [42]. Hence, dementia wards and memory clinics should integrate caregiver education and support activities into therapeutic concepts. In an own geriatrics department running a dementia ward with day clinic and outpatient memory clinic for more than 20 years, hospital activities are complemented by 3 weekly caregiver groups headed by staff members. A problem in the implementation of caregiver groups is the lack of remuneration by health insurances.
Need for multimodal treatment concepts Considering the multifaceted deficits of dementia patients in physical health, cognitive performance and psychosocial communication, dementia patients have a strong need for multimodal treatment concepts addressing all these aspects in a comprehensive way. The dimensions affected, i.e. physical health, cognition and psychosocial communication, reflect key human values. Their optimization is a categorical imperative for those involved in medical care.
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In contrast to pharmacological therapies, the treatment success of non-pharmacological interventions (specifically of interventions targeting cognition and psychosocial communication) strongly depends on local settings that are influenced by confounding factors related to hospital or primary care environments, working equipment, the skills and motivation of the staff, as well as the ability of healthcare providers to provide continuous support in the case of problems arising in the home environment. Active components of treatment cannot always be identified in such complex settings [8]. This observation explains why in comparison to other neurological fields therapeutic evidence is less profound. Compared with pharmacological therapies, research activities in the field of physical, cognitive or psychosocial interventions are less driven by mercantile interests. For this reason, they were less intensively promoted over many years. Ethical aspects in this field may nonetheless arise from stakeholder interests, which are not easy to control, considering the multiple players involved in patient care and the fact that the existence or non-existence of efficacy data has profound consequences for the perception and justification of individual therapeutic groups. Thorough discussion between
physicians, researchers and therapeutic group representatives is needed to counteract research biasing.
Conclusions There has been emerging evidence in recent years demonstrating that interventions targeting the patients’ basic support, external environment, physical, cognitive and psychosocial activity are effective. In addition to patient-centred approaches, evidence for the efficacy of caregiver-centred interventions was provided. There is a need for developing integrative concepts that bring together physical, cognitive and psychosocial strategies. Therapeutic interventions are probably most effective, when adapted to the patients’ practical needs as well as to the needs of the carers. Neurologists have to develop skills in handling the multifaceted needs of dementia patients. These skills are critical for the well-being of our patients.
Disclosure of conflicts of interest The authors declare no financial or other conflicts of interest.
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