Telephone-Based Reality Orientation Therapy for Patients With Dementia: A Pilot Study During the COVID-19 Outbreak

Abstract

Importance: When in-person rehabilitation is not feasible, interventions delivered in remote telephone-based sessions may be an option.

Objective: To determine whether telephone-based reality orientation therapy (T–ROT) can improve cognition, mood, and neuropsychiatric symptoms among patients with major neurocognitive disorders (NCDs) who are forced to isolate and also whether T–ROT can relieve the burden of distress among their caregivers.

Design: Nonrandomized interventional comparison study.

Setting: Individual telephone calls between practitioners and patients and their caregivers.

Participants: Twenty-seven patients (14 in the experimental group, 13 in the control group) with a major NCD and their primary caregivers.

Intervention: Ten T–ROT sessions and a pretest–posttest neuropsychological evaluation over 4 wk.

Outcomes and Measures: Outcomes measured included cognitive and behavioral symptoms of patients with major NCDs and correlations between changes in patient clinical condition and caregiver stress. Primary outcome measures were two measures of depressive symptoms, the Neuropsychiatric Inventory Questionnaire and the Telephone Mini-Mental State Examination, administered at baseline and program discharge.

Results: T–ROT significantly outperformed nontreatment on all measures of depression, behavior, cognition, and caregiver burden.

Conclusions and Relevance: T–ROT combined with emotional support appears to be an effective intervention for monitoring and managing the behavioral symptoms of patients with major NCDs who are forced to isolate.

What This Article Adds: Occupational therapy practitioners can use T–ROT or similar procedures not only during a pandemic but also when it is not possible to treat patients in person at a hospital or at home. Telephone-based treatment may also represent a good practice to be integrated into traditional rehabilitation programs.

T–ROT combined with emotional support was found to be an effective intervention to improve cognition and monitor and manage behavioral symptoms of patients with dementia who are forced to isolate.

In rural areas of Sicily, inpatient and outpatient cognitive–behavioral therapy is provided to people with neurodegenerative disorders (Panerai et al., 2016) through the regional health department with good efficacy and at low cost. The public health measures necessitated by the coronavirus disease 2019 (COVID-19) outbreak, including isolation and restricted hospital access (Wang et al., 2020), motivated us to continue the rehabilitation of these patients remotely by telephone (Dobkin et al., 2020), Skype call (Choi et al., 2014; Zamir et al., 2018), or virtual reality (Arlati et al., 2019; García-Betances et al., 2015).

Nonpharmacological treatments for dementia have shown therapeutic value and few and very rare side effects (Raggi, Tasca, & Ferri, 2017). One such treatment is reality orientation therapy (ROT; Raggi et al., 2007), which involves repeated and meaningful stimulation of orientation to time, place, and person to promote a greater understanding of and sense of control over the environment. ROT has been found to produce significant improvements in neuropsychiatric symptoms, cognition, and behavior in patients with dementia (Spector et al., 2000). Moreover, risk for the onset of depressive symptoms in community-dwelling patients with dementia is high and is attributable to both endogenous causes and external stressors (Aalten et al., 2007; Caraci et al., 2012; Raggi, Tasca, Lupica Capra, et al., 2017). This risk is even higher in older adults with neurodegenerative diseases who are forced to socially isolate (Taylor et al., 2018).

Our aim in this study was to assess the efficacy of telephone support for patients who had benefited from previous rehabilitation intervention in our institute and who were required to stay at home because of the public health restrictions adopted during the COVID-19 outbreak. In addition, we sought to assess changes in stress in their primary caregivers.

Method

Participants

Participants were 14 patients who had neurodegenerative disorders involving cognition and behavior and who had never been infected by COVID-19. Caregivers and patients were informed by two of the authors (Valentina Catania and Donatella Gelardi) over the phone and by email about the possibility to participate in the telephone-based ROT (T–ROT) program; patients were already somewhat familiar with our proposed intervention because they had at least one session of cognitive stimulation training in our inpatient setting. Patients provided informed consent to participate in the intervention directly by ticking a box; none of them were subject to legal interdiction or incapacitation (Grisso & Appelbawn, 1998; Hegde & Ellajosyula, 2016). Their neuropsychiatric symptoms were evaluated at baseline and discharge. Patients who did not consent to the intervention but participated in the baseline and discharge evaluations formed the control patient group.

The study was approved by the local ethics committee (Comitato Etico IRCCS Sicilia-Oasi Maria SS). The intervention was conducted according to the criteria of the Declaration of Helsinki (World Medical Association, 2013).

The characteristics of the experimental and control patient groups are shown in Table 1. The characteristics of their primary caregivers are shown in Table 2. Caregiver Group 1 included caregivers of the experimental patient group; Caregiver Group 2 included caregivers of the control patient group.

Table 1.

Participant Characteristics at Baseline

Characteristic	Patient Group, Mdn (IQR)		Mann–Whitney U Test		r a
Characteristic	Experimental (n = 14)	Control (n = 13)	z	p	r a
Sex, male/female (n)	8/6	4/9		NS^b
Age, yr	65 (59–69)	73 (66–78)	1.67	NS
Education, yr	8 (5–8)	8 (5–13)	0.46	NS
Dementia type (n)				NS^b
Alzheimer’s disease	3	4
Vascular dementia	5	5
Frontotemporal dementia	1	2
Mixed	1	0
Other	4	2
Clinical Dementia Rating Scale	1 (1–2)	1 (1–1)	0.51	NS
Cumulative Illness Rating Scale
Comorbidity	1 (1.3–2.0)	1 (1.0–2.0)	2.28	.023	.44
Severity	1 (1.0–2.0)	1 (1.1–1.5)	0.27	NS
Katz Index of Independence in Activities of Daily Living	6 (5–6)	6 (3–6)	0.80	NS
Lawton Instrumental Activities of Daily Living Scale	5 (2.5–5.0)	3 (1.0–5.0)	0.73	NS
Hamilton Rating Scale for Depression	16 (12.5–19.5)	8 (5.0–12.0)	1.87	NS
Cornell Scale for Depression in Dementia	12 (10.0–13.7)	7 (5.0–12.0)	1.58	NS
Neuropsychiatric Inventory Questionnaire
Symptom frequency	4 (3–5)	3 (2–6)	0.73	NS
Symptom severity	6 (4.2–8.7)	5 (3.0–8.0)	0.46	NS
Telephone Mini-Mental State Examination	17 (13.2–20.8)	19 (16.3–22.8)	0.61	NS

Note. IQR = interquartile range; NS = not significant.

Effect size r = z/√N. ^bχ².

Table 2.

Caregiver Characteristics at Baseline

Characteristic	Caregiver Group, Mdn (IQR)		Mann–Whitney U Test
Characteristic	Group 1 (N = 14)	Group 2 (N = 13)	z	p
Sex, male/female (n)	5/9	6/7		NS a
Age, yr	61 (52.5–68.0)	59 (53.0–67.0)	0.24	NS
Education, yr	8 (8.0–12.7)	13 (5.0–13.0)	0.49	NS
Neuropsychiatric Inventory Questionnaire, Caregiver Distress	6 (5–8)	6 (2–15)	0.27	NS
Caregiver Burden Inventory total score	22 (14.2–36.2)	19 (11.0–43.0)	0.024	NS

Note. IQR = interquartile range; NS = not significant.

χ².

Assessment Instruments and Outcome Measures

The patients had been previously assessed at our institute by neurologists and psychologists; the diagnosis of a major neurocognitive disorder (NCD) was based on criteria of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; American Psychiatric Association, 2013) and the Clinical Dementia Rating (CDR) Scale (Hughes et al., 1982). Before the T–ROT intervention began, we assessed patients’ comorbidities and functional status using the Cumulative Illness Rating Scale (CIRS; Parmelee et al., 1995), the Katz Index of Independence in Activities of Daily Living (Katz et al., 1963), and the Lawton Instrumental Activities of Daily Living Scale (Lawton & Brody, 1969).

The main objective of the study was to determine whether T–ROT could support mood, assessed with the Hamilton Rating Scale for Depression (HAM–D; Hamilton, 1976) and the Cornell Scale for Depression in Dementia (CSDD; Alexopoulos et al., 1988); alleviate neuropsychiatric symptoms, assessed with the Neuropsychiatric Inventory Questionnaire (NPI–Q; Kaufer et al., 2000); and improve cognitive performance, assessed with the Telephone Mini-Mental State Examination (T–MMSE; Newkirk et al., 2004). Outcome measures were administered by a blind assessor during a neuropsychological evaluation at baseline and after treatment (or at 4 wk for the control group). The second aim was to identify any correlations between changes in patients’ clinical condition and changes in caregiver stress, assessed with the Caregiver Burden Inventory (CBI; Novak & Guest, 1989) and the NPI–Q.

Depressive symptoms were measured with two questionnaires. The HAM–D is designed for adults to rate the severity of their depression by probing mood, feelings of guilt, suicidal ideation, insomnia, agitation or retardation, anxiety, weight loss, and somatic symptoms; it includes 17 items. A review of studies using the HAM–D indicated adequate reliability and validity (Bagby et al., 2004). The CSDD was developed to assess signs and symptoms of depression in patients with dementia reported by both the patient and an informant (e.g., family caregiver). The CSDD has high interrater reliability, internal consistency, and sensitivity.

The NPI–Q was used to quantify the frequency and severity of patients’ neuropsychiatric symptoms during the past month. As with the Neuropsychiatric Inventory (Cummings et al., 1994), the NPI–Q assesses the frequency of 12 behavioral symptoms (delusions, hallucinations, agitation–aggression, dysphoria–depression, anxiety, elation–euphoria, apathy–indifference, disinhibition, irritability–lability, aberrant motor behaviors, nighttime behavioral disturbances, and appetite–eating disturbances) and the severity of symptoms, rated 1 (mild) to 3 (severe). Associated caregiver distress is rated on a scale ranging from 0 (no distress) to 5 (extreme distress). Test–retest reliability for the total symptoms score is .80 and for the Caregiver Distress score is .94 (p < .0001 for both). The interscale correlation between the NPI–Q total score and the NPI–Q total Severity score was .91, and between Caregiver Distress scores was .92.

The T–MMSE, a short 26-point scale useful for geriatric outpatient assessment, was administered to measure cognitive impairment. In the validation study for the T–MMSE, total scores showed a strong correlation (Pearson’s r = .88, p < .001) with the original MMSE (Folstein et al., 1975), and hearing impairment and education level did not significantly affect telephone-based performance.

For each patient, one primary family caregiver was interviewed on the telephone using the CBI, which enables multidimensional assessment of caregiver burden of distress. It includes 24 items in five subscales: Time Dependence Burden (time demands and restrictions patient imposes on caregiver), Developmental Burden (caregiver’s feeling of being out of sync with respect to their peers), Physical Burden (strain on caregiver’s physical health associated with caregiving demands), Social Burden (conflict between caregiver’s roles; e.g., work vs. family), and Emotional Burden (caregiver’s negative feelings about patient’s unpredictable or bizarre behavior). Each item is scored using a 5-point Likert scale ranging from 0 (strongly disagree) to 4 (strongly agree). The 24 item scores are summed; total scores >36 indicate risk of burnout, and scores near or slightly above 24 indicate the need to take a break and rest. The Italian version of the CBI (Marvardi et al., 2005) has shown high internal consistency (Cronbach’s αs >.80) for the scale and its dimensions.

Study Design and Intervention

This nonrandomized interventional comparison study (Kazdin, 1992) included 2 assessment sessions and 10 sessions of T–ROT over 4 wk (3 sessions per week). In the first week, the baseline assessments and 2 T–ROT sessions took place; in the second and third weeks, 6 sessions of T–ROT were administered; and in the last week, the 9th and 10th T–ROT sessions and the final assessments took place. A clinical psychologist (Sabrina Musso) completed the assessments; another psychologist (Domenica Tasca) who was blind to the results of the baseline assessments administered the 10 sessions of T–ROT (Brook et al., 1975; Metitieri et al., 2001).

Each session focused on a theme. Session 1 was titled “Me and the Calendar”; Session 2, “Holidays and Anniversaries”; Session 3, “My Story”; Session 4, “My Family”; Session 5, “My Home”; Session 6, “My Daily Life”; Session 7, “My Character (Nature)”; Session 8, “My Appearance”; Session 9, “My Preferred Food”; and Session 10, “My Leisure Time.” Each training session lasted about 50–60 min and included three phases: (1) opening (greetings, pleasantries, today’s date), (2) main activity focusing on the session theme, and (3) closing (thanks for attending, three words summarizing the session, reminder of the next appointment, goodbye). Emotional support was also provided individually in an introductory interview to every session in an effort to reduce anxiety. Open-ended questions were used, such as “You seem a little worried today; do you want to talk about it?” or “Do you want to tell me more about this issue?” The psychologist administering the session showed understanding, acceptance, and empathy for both negative and positive emotions and offered encouragement and reassurance.

Data Analysis

Asymmetry and kurtosis calculations failed to show a normal distribution for most of the variables analyzed in this study, so nonparametric statistics were used. Between-group comparisons were done with the Mann–Whitney U test (Siegel, 1956). To verify whether the T–ROT intervention was effective for patients and caregivers, within-group analyses were performed using the Wilcoxon matched pairs test (Siegel, 1956). For within- and between-group comparisons, significance was set at p < .05. For statistically significant differences, we calculated effect sizes using the formula r = z/√N; effect sizes of |.10| were considered small, |.30| medium, and |.50| large (Field, 2005). The χ² test was used for frequency data. A correlation analysis of changes in patients’ cognitive and behavioral symptoms and changes in caregiver burden was carried out using Spearman’s test; according to Cohen (1988), values of .10, .30, and .50 correspond to small, medium, and large correlations, respectively. For statistical calculations, we used Primer of Biostatistics software (Glantz, 2005).

Results

No statistically significant differences were found at baseline between the experimental and control patient groups (see Table 1), with the exception of number of comorbidities; the experimental group had significantly more comorbidities (z = 2.28, p = .023, r = .44). No significant differences were found between the two groups of primary caregivers (see Table 2). Therefore, the patient groups and the caregiver groups were considered comparable.

Pretest–posttest differences are shown for the patient groups in Table 3 and for the caregiver groups in Table 4. In the experimental patient group, decreased behavioral and psychological symptoms of dementia, especially depressive symptoms, were found compared with the control patient group. For both measures of depressive symptoms, significant differences were found with large effect sizes. Significant differences were also found in symptoms of dementia measured by the NPI–Q, with a medium effect size for Frequency and a large effect size for Severity. A significant increase in cognitive functioning measured using the T–MMSE was found in the experimental patient group compared with the control patient group, with a large effect size. Regarding caregivers, significantly lower levels of distress (NPI–Q) and burden (CBI) were found in Group 1 than in Group 2, with a large effect size for Caregiver Distress and a medium effect size for Burden.

Table 3.

Comparison of Differences in Pretest–Posttest Scores for the Two Patient Groups

Measure	Patient Group, Mdn (IQR)		Mann–Whitney U Test		r ^a
Measure	Experimental (n = 14)	Control (n = 13)	z	p	r ^a
Cornell Scale for Depression in Dementia	−3 (–3.7/–2.0)	0 (0/0)	2.70	.007	.52
Hamilton Rating Scale for Depression	−4 (–6.0/–2.2)	0 (0/0)	3.28	.001	.63
Neuropsychiatric Inventory Questionnaire
Frequency	−1 (–1/0)	0 (0/0)	2.34	.019	.45
Severity	−1 (–1.75/–0.25)	0 (0/0)	3.09	.002	.59
Telephone Mini-Mental State Examination	3 (2.4/4.4)	0 (0.0/1.1)	2.69	.007	.52

Note. IQR = interquartile range.

^aEffect size r = z/√N.

Table 4.

Comparison of Differences in Pretest–Posttest Scores for the Two Caregiver Groups

Measure	Caregiver Group, Mdn (IQR)		Mann–Whitney U test		r ^a
Measure	Group 1 (N = 14)	Group 2 (N = 13)	z	p	r ^a
Neuropsychiatric Inventory Questionnaire, Caregiver Distress	−1 (–1.75/–0.25)	0 (0/0)	3.335	.0001	.64
Caregiver Burden Inventory total score	−1 (–1.75/0.00)	0 (0/0)	2.21	.027	.42

Note. IQR = interquartile range.

^aEffect size r = z/√N.

Within-group comparisons showed significant improvements in the experimental patient group with a large effect size for depression (HAM–D, z = 2.98, p = .0028, r = .80), neuropsychiatric symptoms (NPI–Q Frequency, z = 2.52, p = .011, r = .67; NPI–Q Severity, z = 2.80, p = .005, r = .75), and cognition (T–MMSE, z = 3.23, p = .0012, r = .86). Among caregivers, Group 1 showed significant improvement with a large effect size in distress (NPI–Q Caregiver Distress, z = 2.80, p = .005, r = .75). No significant differences were found in the control patient group and in caregiver Group 2 for any of the measures used in the study.

Significant positive correlations with large effect sizes were found between distress (NPI–Q Caregiver Distress) and patient depression symptoms (CSDD, r = .68; HAM–D, r = .59) and symptom severity (NPI–Q Severity, r = .72). Similarly, caregiver burden (CBI) was correlated with patients’ CSDD scores (r = .48) and NPI–Q Severity scores (r = .47), with effect sizes close to Cohen’s (1988) indication for a large effect size. Therefore, the decrease in patient behavioral and psychological symptoms corresponded to a decrease in caregivers’ burden and distress. No significant correlation was found between caregiver burden and distress and changes in patient cognitive status.

Discussion

The COVID-19 outbreak is causing exceptional stress on health care providers, systems, and services. Therefore, health systems and services are being reconfigured to ensure that patients receive the necessary follow-ups. In our study, delivery of T–ROT combined with emotional support helped maintain continuity of care and manage neuropsychiatric symptoms and depression for patients with dementia during the pandemic. Overall, within- and between-group analyses indicated a significant direct effect of the T–ROT intervention on patients’ cognitive and behavioral functioning.

We speculate that this benefit occurred through two factors. First, cognitive stimulation appeared to be effective even when conducted by telephone. Second, the emotional support provided was of value to this sample of frail older adults experiencing a dramatic increase in loneliness because of the social distancing required to reduce the spread of COVID-19. Only scores on the CSDD, one of two scales used to detect depression symptoms, showed no significant improvement in the within-group analysis; scores on the other depression scale, the HAM–D, showed significant improvement. The difference in results from the two scales might be explained by the fact that the CSDD was administered to caregivers, who reported depression symptoms in the patients, whereas the HAM–D was administered directly to patients. A review of individual data showed a mismatch in two dyads between ratings by the caregivers (how they judged the patient’s mood) and those by the patients themselves (how they judged their own mood).

A previous study showed that telephone-based cognitive–behavioral intervention can improve quality of life in caregivers of patients with dementia (Meichsner et al., 2019). In our study, T–ROT led to improvement in caregiver stress and burden as measured by the NPI–Q (in both within- and between-group analyses) and the CBI (only in the between-group analysis) for the caregivers of patients with dementia. Results of the within-group analysis of CBI scores did not reach statistical significance, perhaps because of the worsening condition of one participant in the experimental group related to the occurrence of new problematic events in the family (this information was derived from the family history). The improvement in caregiver stress and burden seemed to be related more to patients’ improvement in neuropsychiatric and mood disorders than to patients’ cognitive changes, thus enhancing the value of the emotional support component of this comprehensive treatment program.

Although a significant difference was detected at baseline between the two patient groups on the CIRS Comorbidity Index, this was not true for the CIRS Severity Index. This finding may reflect a disparity in overall clinical severity. The patient groups were heterogeneous in the etiology of their major NCD (e.g., primary neurodegenerative, vascular, mixed), consistent with our initial goal of providing all patients the chance to continue to benefit from the treatment program as scheduled.

Two main limitations of this study should be acknowledged. First, the number of patients in both the experimental and control groups was small; therefore, this study provides preliminary evidence to support future research exploring the efficacy of T–ROT. Moreover, this limitation did not allow us to investigate whether different responses to T–ROT were present, for example, based on the severity of the patients’ condition. Second, lack of follow-up assessment of study outcomes prevented us from determining whether the effects of the treatment persisted over time in both patients and caregivers.

Implications for Occupational Therapy Practice

The results of this study have the following implications for occupational therapy practice with patients with dementia:

Occupational therapy practitioners who adhere to evidence-based practices can consider implementing comprehensive treatment that includes ROT and psychological support to treat frail older adults with major NCDs with the aim of ensuring well-being and maintenance of cognitive function and controlling behavioral disturbances.

Practitioners can consider using T–ROT or similar approaches to treat the decreased motivation to participate in occupations that is typically shown by patients with dementia and that aggravates patients’ self-perception of inadequacy.

During treatment of patients with dementia, practitioners can guide caregivers in the management of behavioral disturbances through the use of simple but meaningful activities.

Telehealth is a service model that can be widely incorporated into occupational therapy practice; by removing barriers to accessing care, it can foster clients’ occupational performance, adaptation, health and wellness, and quality of life.

Conclusion

T–ROT combined with emotional support appears to be an effective intervention for maintaining continuity of management of patients with dementia during the pandemic. The integration of technology into the treatment pathway for cognitive stimulation may be desirable not only during periods of public health restrictions but also in traditional rehabilitation programs for patients with major NCDs.

Footnotes

Acknowledgments

We acknowledge the valuable contribution of all families and patients who voluntarily participated in the study. We are grateful to Rosa Di Giorgio for her contribution to the final version of the manuscript. This research project was funded by the Italian Ministry of Health—Ricerca Corrente 2020. The data that support the findings of this study are openly available from Mendeley Data at

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