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Home-Based Behavioural Family Intervention in Dementia : A Case Illustration
Manish Parswani, Mahendra Sharma and Srikala Bharath, Behaviour Medicine Unit
Department of Mental Health & Social Psychology
National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore 29, India
The case presented here is a part of an intervention study carried out on patients with Dementia and their caregivers which illustrates the effectiveness of Home-based therapeutic program in management of behavioural problems in Dementia. The intervention consisted of 15 sessions spread over a period of 1 ½ months including assessments, which comprised of psychoeducation, problem solving strategies, reality orientation, differential reinforcement and time out. Results indicate clinically significant reduction in the patient’s behavioural problems and dysphoric mood. Caregiver’s distress also decreased significantly. Results are discussed along with implications and suggestions for future research
Key words: Dementia, Behaviour therapy, Caregiver burden, Clinical significance
Ageing leads to several biological changes that take place over time and results in progressive loss of functional capacity. Depression, Hypertension, Arthritis and Dementia are highly prevalent among the aged (Fisher, Carstensen, Turk & Noll, 1993). Current estimates reveal that there are about 24·3 million people with dementia in the world with 4·6 million new cases of dementia every year (one new case every 7 seconds). Most people with dementia live in developing countries (60% in 2001, rising to 71% by 2040). Numbers in developed countries are forecast to increase by 100% between 2001 and 2040, but by more than 300% in India, China, and their south Asian and western Pacific neighbors (Ferri, Prince, Brayne, Brodaty, Fratiglioni, Ganguli et al., 2006). Approximately 83% of these patients show Behavioural and Psychological Symptoms of Dementia (BPSD) (Finkel, 2001). In course of time, the elderly with dementia manifests increasing difficulty in carrying out activities of daily living, impaired judgment and behavioural disturbances like hoarding, wandering, aggression and disinhibition.
Families are the first line of care for patients with dementia and often caregivers sacrifice their own health and well-being while providing extensive care. Research has shown evidence of considerable physical and psychological morbidity like fatigue, hypertension, anxiety and depression, greater burden (emotional, physical and financial), higher strain and impaired quality of life in caregivers of dementia patients (Knight, Lutzky & Macofsky-Urban, 1993; Dunkin & Anderson-Hanley, 1998; Aguglia, Onor, Trevisiol, Negro, Saina & Maso, 2004; Cooper, Balamurali & Livingston, 2007).
Considering the needs of caregivers of patients with dementia, several interventions have been developed such as support groups which aim to provide emotional support, psycho-education to families and enhance their coping skills. Studies provide evidence supporting the potential of family group intervention in improving psychological well-being, knowledge about dementia care and mastery among their caregivers (Faran & Keane Hagerty, 1994; Hosaka & Sugiyama, 1999; Hepburn, Tornatore, Center & Ostwald, 2001; Hepburn, Lewis, Tornatore, Sherman & Bremer, 2007).
Cognitive and behavioural approaches have been wide ranging, and have focused on teaching specific behavioural skills to the caregiver. Positive outcomes of studies using cognitive and behavioural approaches have been reported in most of the studies which include increased social support, decreased depression and burden and increased knowledge about dementia care (Brodaty & Gresham, 1989; Marriott, Donaldson, Tarrier & Burns, 2000). Gallagher-Thompson & Coon, (2007) in their recent review, identified evidence-based psychological treatments for reducing distress, and improving well-being of family members caring for an older relative with significant cognitive and/or physical impairment. Results indicated strong empirical support for cognitive–behavioral therapy. Within the multi-component category, programs using a combination of at least two distinct theoretical approaches (e.g., individual counseling and support group attendance) were also found to be effective.
Psychological interventions with dementia patients and their caregivers in India are at the initial phase. Indian studies have reported high correlation between behavioural problems in patients with dementia and psychological distress and poor quality of life in their caregivers. There is a clear need for more education, advice and support for families affected by dementia (Chaturvedi, Tazaki, & Nakane, 1999; Sunanda, 2000; Srinivas 2002; Shaji, Smitha, Praveen Lal & Prince, 2002). Most intervention studies have been carried out with institutionalized patients. Few studies have examined the effectiveness of home-based programs. Evidence for the effectiveness of interventions is limited, mainly by methodological shortcomings. Considering caregiver distress in dementia and their role in patient care, an urgent attention to this aspect is needed.
Mr. S.K, 84 year old married male, studied up to high school, retired officer in defense service from middle socio-economic status, urban background living in Bangalore, Southern India. He was hypertensive and had been operated for prostrate enlargement in 1993. Family history indicated depression in patient’s younger daughter, who committed suicide 6 years back by taking an overdose of tranquilizers. His spouse, 59 years old was the primary caregiver, educated upto high school who lived with the patient alone. The first daughter who stayed nearby helped them in household chores. Premorbidly, the patient was described as authoritative, strict and an autocratic decision maker. He presented with complaints of anger outbursts, forgetfulness, deficits in self-care skills and double incontinence since 5 years with insidious onset and progressive course. Patient was noticed to be forgetful and had difficulty remembering names of familiar people. He misplaced things like keys or personal belongings and assign blame to family members. He was unable to carry out simple calculations or handle money. He needed help in eating, dressing and bathing. He often became angry over trivial issues. Mental Status Examination (MSE) revealed irrelevant talk, euthymic mood and impaired cognitive functions with poor judgment. Magnetic Resonance Imaging (MRI) revealed diffused cerebral atrophy. A diagnosis of Multi-infarct Dementia v/s Alzheimer’s disease was made. Severity of dementia was measured using Clinical Dementia Rating (CDR) (Hughes, Berg, Danziger, Coben, & Martin, 1982) on which he obtained an overall score of 2 indicating moderate degree of dementia.
Behavioural Problem Checklist (BPC) (Niederehe & Fruge, 1984) was used to assess the range of behavioural problems of the patient and caregiver’s emotional reactions to these behavioural problems. The checklist contains 52 items and the scale points expand from 0 to 4. Respondents (caregivers) rate the frequency and duration with which the dementia patient shows behaviour and how upsetting it is for them. The scale has 6 dimensions: Cognitive symptoms, Self care deficits, Instrumental Activities of Daily Living (IADL), Dysphoric mood, Acting-out behaviour, Inactivity/withdrawal. Relevant scores under each of the 6 dimensions are summed up and divided by the number of items to derive at patient’s mean frequency of behavioural problems and caregivers mean distress per behavioural problem.
Zarit Burden Interview (ZBI) (Zarit, Reever & Bach-Peterson, 1980), a structured interview schedule was used to assess the overall subjective burden of the primary caregiver. Caregivers are asked to respond to the series of 22 questions about the impact of the patient’s disabilities on their life. Estimates of the degree of burden can be made as little burden (scores 0-20), mild burden (scores 21-40), moderate burden (scores 41-60) and severe burden (scores 61-88). Internal reliability has been estimated using Chronbach’s alpha at 0.91. Test retest reliability is reported at 0.71.
General Health Questionnaire (GHQ-28) (Goldberg & Williams, 1988) was used to assess the psychological morbidity in the primary caregiver.
Therapy: Home-based behavioural family intervention was provided consisting of 15 sessions spread over a period of one and half months including pre-therapy, post- therapy and follow up assessment. Detailed behavioural assessment was carried out. Patient’s spouse was asked to maintain a ‘problem diary’ (with the help of her daughter) to help identify the antecedents and consequences of each target behaviour. A therapeutic program was formulated consisting of psychoeducation to the family caregivers (Spouse and daughter) about the nature, course, prognosis and management of dementia. The information provided was based on the World Health Organization (1999) manual – ‘Alzheimer’s Disease - Help for Caregivers’. Misconceptions of the spouse regarding the patient’s illness were clarified. She thought that he was capable of taking care of himself and troubled her intentionally. Information about dementia helped her understand his problem behaviours were not deliberate but occurred due to the disease. The caregivers were taught problem solving skills and the use of behavioural techniques like time out and differential reinforcement in dealing with the patients behavioural problems. Following are some examples of how the target behaviours were tackled using the aforementioned approaches.
Anger : Differential reinforcement and time out were employed to handle patient’s anger. He was uncooperative when carrying out activities like changing clothes and bathing and would get angry when he was forced to do so. The caregivers were advised to speak calmly with the patient and explain the reason why they wanted him to do that activity. When the patient would shout or get very angry, caregiver was asked to leave the room for 5 minutes after telling him that she will be back when he became calm (time out). They were asked to deliver positive statements after his anger subsided, such as, “I feel happy that you are keeping calm and listening to me”. If he got very angry, he was told “I feel unhappy when you shout at me, it hurts me”. These verbal messages were spoken slowly while maintaining eye contact and holding the patient’s hand. Caregivers were counseled to keep their remarks short and specific.
Repetitive questioning: The patient would ask questions repeatedly such as “When is the food getting ready?”, “Did I have lunch/dinner?” . Caregivers were asked to write the answer on a piece of paper and display it on such instances while communicating the following with a calm tone, maintaining eye contact and holding his hand, “I heard your question; this is my answer…. are you clear? Please repeat what I said”.
Deranging things: Whenever the patient disarranged things, he was asked to rearrange it for which he was positively reinforced by taking him out for an evening walk. If he refused to comply, the caregiver was asked to express disappointment using differential reinforcement as mentioned above.
Difficulty in falling asleep : Mr. S.K also had sleep disturbances, such as getting up in the middle of the night, would start talking about past events and become restless. Sleep-hygiene schedule was introduced - he was not allowed to sleep in the afternoon and was engaged in some activity in the daytime such as reading, watching TV or listening to music. Fixed bed timings were scheduled at night and caffeinated beverages were restricted after 5 p.m.
Incontinence: Caregivers were asked to take the patient to the toilet every 1½ hours as urinary incontinence occurred every 2.5 hours. He was not able to indicate the need to urinate and did not have awareness about the soiling of his clothes. His clothes were arranged in such a way that it could be easily removed. The intake of water before bedtime was limited.
Cognitive deficits: Mr. S had difficulty locating toilet and bathroom. He also had difficulty wearing clothes as he was confused about the order in which the clothes were to be worn. He could not recollect the day, date and the year if asked. For these difficulties components of reality orientation was introduced wherein the caregiver was asked to assist the patient in maintaining a diary or calendar for remembering the day, date and year. Big labels were stuck on the wall to guide the patient the way to the toilet and bathroom. His clothes were arranged in a particular order such as placing undergarments and then pants and shirt on the bed from his left to the right so that he could wear them under supervision.
Externalization of interests was used for the spouse. She was suggested to involve herself in pleasurable activities that would help lift her mood. She was initially reluctant and had guilt feelings – “How can I think about myself when my husband is unwell”. The therapist explained that if she is maintained good health, she would be able to take care of the patient more efficiently. Later, she and the patient decided to go out to a temple and garden every day in the evening. Other activities such as listening to religious songs, visiting relatives’ place, writing letters to old friends were continued and alternated which brought relief to her distress. The patient’s daughter was given responsibility to handle those duties which he could no longer carry out as a result of the disease such as shopping or handling money. Legal matters were settled like preparation of Will and transfer of bank accounts in view of the progressive nature of patient’s illness.
Results were analyzed using clinically significant changes (50% and above, Blanchard & Schwarz, 1988) based on pre therapy, post therapy and follow-up assessment data.
Table 1 shows that the patient’s overall behavioural problems were decreased by 36% (total pre mean = 2.13, total post mean = 3.34) indicating that the problem behaviours reduced from 3-6 times a week to 1-2 times a week at the end of therapy. At follow-up this improvement was maintained. Caregiver’s distress related to overall behavioural problems of the patient decreased by 44% at post-assessment (pre mean distress =3.16, post mean distress = 1.77) indicating that the patient’s behavioural problems caused little to moderate stress as compared to pre intervention (“quite a lot”). The cognitive deficits of the patient reduced by 32% and self-care deficits by 27% at post assessment and these improvements were maintained at 6-week follow-up. Patient was able to locate toilet and bathroom on his own and wear clothes under supervision. He was partially able to bathe and use toilet as he became more co-operative. However the patient’s IADL deficits, inactivity and withdrawal persisted. Clinically significant reduction was observed in patient’s dysphoric mood and acting out behaviour at post-assessment (62% and 65% respectively). His restlessness, irritability and anxiety came down which reduced caregiver’s distress significantly. Repetitive questioning, verbal threats and anger outbursts were no longer observed at the end of therapy as well as at follow-up assessment.
Table 1 : Pre-therapy, Post-therapy and Follow-up scores of problem behaviours in the patient and distress in primary caregiver on BPC
Frequency of Distress in Primary
Domains problem behaviour Caregiver
Pre Post Follow a Clin Sig. Pre Post Follow Clin Sig.
-up Pre–post -up Pre-post (%) (%)
symptoms 3.14 2.14 2.14 31.85 3.33 1.83 1.67 45.04
deficits 3.67 2.67 2.67 27.25 3.33 2.00 2.00 39.94
mood 3.25 1.25 1.00 61.54 4.00 1.50 1.50 62.50
withdrawal 3.00 2.33 2.67 22.33 2.33 2.00 2.00 14.16
b IADL 3.00 3.00 3.00 0.00 2.00 1.50 1.50 25.00
behaviour 4.00 1.40 1.20 65.00 4.00 1.80 1.40 55.00
Mean 3.34 2.13 2.11 36.23 3.16 1.77 1.67 43.99
Frequency of problem behaviour Distress of primary caregiver
0 = never 0 = not at all
1 = not in the past week 1 = a little
2 = 1-2 times last week 2 = moderate
3 = 3-6 times last week 3 = quite a lot
4 = daily 4 = extremely
a = Clinically Significant change
b = Instrumental Activities of Daily Living
In Table 2, scores of primary caregiver on ZBI and GHQ-28 are shown. Scores indicate 31% reduction in burden of the primary caregiver which was maintained at follow-up assessment (pre = 52, post and f-up = 36). She was able to carry out other activities along with patient’s care and did not feel under strain all the time unlike before. Scores on GHQ-28 indicate that there was clinically significant reduction of 71% in psychological symptoms of the primary caregiver at post therapy assessment that was maintained at 6-week follow-up (pre = 7, post and f-up = 2). Initially her sleep was inadequate due to excessive worry, which improved after intervention and maintained at 6-week follow-up.
Table 2 : Pre-therapy, Post-therapy and Follow-up assessment scores of Primary Caregiver on ZBI and GHQ-28
Sl. Measure Pre Post Follow- Clinical
No. up Significance
1. Zarit Burden
Interview (ZBI) 52.00 36.00 36.00 30.76
a. Somatic symptoms 2.00 0.00 0.00 100.00
b. Anxiety/ Insomnia 3.00 1.00 1.00 66.67
c. Social dysfunction 2.00 1.00 1.00 50.00
d. Severe depression 0.00 0.00 0.00 00.00
Total Score GHQ-28 7.00 2.00 2.00 71.00
The present case illustration demonstrates the scope of behavioural intervention in management of dementia. Combining different techniques in intervention with patients and caregivers have been found to be effective (Qizilbash, Schneider, Chui, Tariot, Brodaty, Kaye & Erkinjuntti, 2002; Gallagher-Thompson & Coon, 2007). The therapeutic program in the present case was structured and home-based, spread over 15 sessions consisting of psychoeducation, providing written materials for education about dementia, teaching problem solving skills to the caregiver, use of behavioral techniques such as time out and differential reinforcement and reality orientation. The strengths of the intervention were that it directly targeted the patient’s behavioural disturbances through the caregivers by empowering them to manage these behaviours and also helped in reducing their distress by empathic listening, ventilation and externalization of interests. Even after the intervention was terminated, caregiver could successfully manage the problem behaviours of the patient. The therapist demonstrated the behavioural skills to manage patient’s problematic behaviours during the intervention which gave the caregiver a clear idea regarding its application.
While most of the studies have been carried out in groups and at institutionalized settings, in the present case, home-based intervention was chosen. It is a strenuous experience for the caregiver to bring the elderly with dementia to the clinic for the intervention on regular basis due to patient’s cognitive deficits and behavioural symptoms. Home-based intervention occurred in a naturalistic setting, allowed direct monitoring of patient’s symptoms and facilitated generalization of therapeutic gains. Brodaty, Gresham & Luscombe (1997) reported that a residential setting might be an advantage as it promotes more cohesive bonding and allows for observation of behaviours not easily accessible with a hospital-based program.
Although the effect of information and psychoeducation itself was not taken as an independent outcome measure, Caregiver reported that, ‘‘it helped us in changing our attitude towards the patient’’. “We know how to manage his problems now”, “demonstration of techniques helped us in managing the patient”.
In the present case, there was clinically significant reduction in caregiver’s distress as the patient’s dysphoric mood and acting out behaviour decreased. Although scores indicate marginal increase in these symptoms at 6-week follow-up, the caregiver’s distress did not increase and she was more confident of handling problematic behaviours of the patient. Reasons for these positive findings could be that the intervention was individualized, home-based and incorporated different therapeutic strategies matching the needs of the caregivers. The presence of social support and the joint family system in Indian culture also helps in sharing the caregiving burden.
To the knowledge of the authors this is the first study of its kind in India. It provides new directions in the management of behavioural problems in dementia and in reducing caregivers’ burden and psychological symptoms. Although, disabilities of patients with dementia may be irreversible, the present therapeutic intervention has the potential to empower the family members to manage different behavioural disturbances in the patients, which in turn can lower their stress. Each technique and method described in the therapeutic program provides a different resource for families, which can be incorporated in day-to-day clinical practice and assist them in providing care to their relative with dementia.
Future studies should include larger sample size to ensure generalizability of results. Researchers can begin to consistently implement this treatment framework by including control group to evaluate its efficacy. It would be additionally beneficial to have periodic follow-up assessments which would allow effective monitoring of patients’ symptoms and caregivers’ skills and distress in managing the patient with dementia.
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