The effectiveness of a couple-based intervention for people living with mild Alzheimer’s disease and their spousal caregivers in Korea

Abstract

Background and objectives

We evaluated the effectiveness of a Korean version of the Couples Life Story Approach (CLSA-K), a structured life-review program originally developed in the U.S. to help older adults with dementia and their spousal caregivers engage with each other and improve their quality of life.

Research design and methods: Fifty mild people living with mild Alzheimer’s disease and their spouses were recruited and 37 couples completed the five-week CLSA-K program. Data on psychosocial outcomes—i.e., depressive symptoms, talkativeness, mutuality (for both caregivers and care recipients) and burden (for caregivers)—were collected one week prior to (Time 1) and one week after the intervention (Time 2). Using repeated measures generalized linear models, we examined the differences in the amounts and patterns of the changes in outcomes according to age, gender, and the care-recipients’ level of cognitive impairment.

Results

Some participants benefited from the CLSA-K program, while others did not. For caregivers, mental health, and marital quality remained stable, while caregiver burden increased among those with spouses who had moderate levels of cognitive impairment. For care-recipients, younger and male participants showed increased talkativeness.

Discussion and implications

CLSA-K appears to be promising for specific subgroups of participants in Korea. Multi-component or other approaches may be more beneficial for other couples. Cultural differences as well as social positions may play a role in the acceptability and efficacy of the couple-based intervention.

Keywords

couple-based intervention structured life review dementia Alzheimer’s disease intervention

With the global population aging, the number of people with dementia are rapidly growing in Asian countries. In South Korea (hereafter, Korea), 540,755 people or 9.18% of adults aged 65 and older were reported to have dementia in 2012. This number is expected to double by 2024 and quadruple by 2041 (Ministry of Health and Welfare, 2012). Such rapid increase in the prevalence of dementia will result in an unprecedented economic and caregiving burden not only for individual families but also for the whole society. Accordingly, developing effective early intervention programs for persons with dementia and their caregivers is imperative, especially in nations that are rapidly aging, such as Korea.

In Korea, for approximately 90% of people with dementia who live in the community, care is provided informally, mostly by their family members. Among informal caregivers, 31.9% are spousal caregivers (SCG; Ministry of Health and Welfare, 2011). Globally, SCG are especially vulnerable to caregiving burden given their ages. In many cases, SCG are also dealing with their own health problems (Schulz & Martire, 2004). The changes in marital relationships induced by dementia may also create psychological distress to SCG. As the dependence of persons with dementia on their SCG increases due to dementia, the reciprocity between spouses will likely decrease, and SCG may feel less supported by their spouse with dementia (Gallagher-Thompson, Dal Canto, Jacob, & Thompson, 2001). Consequently, SCG report more depressive symptoms, greater financial and physical burden, and lower levels of psychological well-being than children and children-in-law caregivers (Hong & Kim, 2008; Pinquart & Sörensen, 2011). Couples also suffer reduced relationship quality as one partner’s cognitive impairment progresses (Lee, 2006).

In the U.S., in order to help couples affected by dementia maintain their relationship quality and reduce caregiving burden, a few couple-based interventions have been developed. These interventions emphasize that maintaining ‘togetherness’ and a shared identity as a couple in the face of memory loss are important ingredients for positive emotional outcomes (Epstein, Auclair, & Mittelman, 2007; Hellström, Nolan, & Lundh, 2007; Hernandez, Spencer, Ingersoll-Dayton, Faber, & Ewert, 2017; Ingersoll-Dayton, Spencer, Campbell, Kurokowa, & Ito, 2016; Smits et al., 2007).

Interventions targetting the persons with dementia and SCG together, with the focus of enhancing their relationship quality may be especially helpful for Korean older adults, given that Korean older couples have been socialized with rigid gender norms (i.e., husbands work outside the home as a breadwinner and wives take care of the family at home; Park & Cho, 1995). Thus, they may not be accustomed to changes in roles and responsibilities that occur as one partner loses memory. However, to date, few psychosocial interventions in Korea have addressed the challenges related to relationship quality between persons with dementia and SCG through a couple-based approach. Instead, most programs targeted either persons with dementia or SCG to meet their individual needs. For persons with dementia, many interventions focus on enhancing or maintaining their cognitive functioning through cognitive therapy or exercise programs (Jeong, Hwang, & Youn, 2010; Ministry of Health and Welfare, 2015; Song & Kim, 2013). For SCG, respite care or educational programs exist to help relieve their caregiving burden (Kim, Kim, Sohn, & Min, 2007; Lee et al., 2013; Ministry of Health and Welfare, 2015).

The Couples Life Story Approach (CLSA) is a five-week couple-based intervention which was developed in the U.S. to help couples better cope with the challenges of dementia (Ingersoll-Dayton et al., 2016). In this intervention, the couples use photos to reflect on their lives as a couple from early marriage years to the present, and learn communication skills to better cope with the challenges of dementia. The interventionist helps the couples talk about their past by asking questions about their marriage or any milestones they achieved and teaches communication skills, such as encouraging the spouse to use photos to stimulate their memory, active listening, giving compliments, avoiding testing questions, and finding what’s important to the spouse. Interventionists were master of social work students who received training to conduct the CLSA. Training included reading and discussing issues related to dementia and theoretical background of the intervention, watching documentary film of firsthand experiences of persons with dementia, and shadowing the CLSA sessions implemented by one of the primary researchers. After the fourth session, the interventionist makes a photo book based on the couple’s life stories, and reviews it with the couple at the last session. In a previous article, we describe how the CLSA was adapted to make it culturally relevant to couples in Korea (CLSA-K; Kwak, Ha, Hwang, Ingersoll-Dayton, & Spencer, 2018).

The current study examines the efficacy of the CLSA-K with respect to relationship quality and care burden in Korean couples with mild Alzhimer’s dementia. We also investigate who are more or less prone to benefit from the CLSA-K. Specifically, we examine whether participants’ age and gender as well as care-recipients’ levels of cognitive functioning moderate the changes in the outcome variables, given that these characteristics will likely influence the degree of openness to a couple-based program and the capacity of communications between spouses (Braun et al., 2009; Evans & Lee, 2014).

First, we posit that the effect of a couple-based intervention would differ by age. Previous studies have suggested that younger couples in Korea are more likely to engage in open communications than older couples (Park, 2001). Older Korean men and women were socialized to perform different tasks within households (e.g., men work on earning a living, whereas women focus on raising children and taking care of household members) and few of them engaged in shared leisure activities with their spouse (Kwon & Hur, 2010; Park & Byun, 2013). In particular, oldest-old couples in Korea lived in an era in which men and women did not interact much with each other based on Confucian teaching that men and women operate in different spheres and have different roles and places in society (Park & Lee, 2005). Hence, a couple-based intervention may be more difficult for older cohorts to respond to than younger cohorts.

Likewise, men and women may differ in the extent to which they benefit from a couple-based program. For women, reminiscing about the past and talking about their life stories may be an extension of their everyday activities with family and friends (Pillemer, Wink, DiDonato, & Sanborn, 2003). Studies conducted in various countries report that women engage in reminiscing activities more frequently than men (Hong, 2000; Webster, 1995) Thus, wives may be more open than their husbands to interventions such as CLSA-K. Alternatively, as shown in other psychosocial interventions (Stroebe & Stroebe, 1991), therapeutic effects of these reminiscence programs may be more beneficial for older men who have not had a chance to express their thoughts or emotions throughout their lives. In particular, male caregivers may benefit from the opportunity to talk about their caregiving burden and learn communication skills.

Finally, we examine the role of care-recipients’ cognitive functioning level because the couple-based intervention may not work well for those who have poorer cognitive ability. Our research examines the effectiveness of a dyadic intervention among individuals with mild dementia who are more likely to benefit from structured life reviews than those who have more severe clinical symptoms (Haight & Haight, 2007). However, differential levels of cognitive functioning within this group may influence the study participants’ level of engagement in the program. Those who have more severe impairment may not be able to engage in reminiscing and the caregiver may become frustrated or sad to watch the care-recipient’s deteriorating conditions (Van't Leven et al., 2013).

In sum, using quantitative data collected prior to and after the intervention, we examine (1) changes in the level of depression, marital relationship, and perceived burden among program participants; and (2) the extent to which the pattern of changes in these indicators differs by people with dementia’s and their caregivers’ age and gender, and people with dementia’s level of cognitive functioning.

Research design and methods

Study participants

We recruited study participants through a dementia clinic at Seoul National University Bundang Hospital (SNUBH). This hospital is located in a suburban area near Seoul, South Korea. Our inclusion criteria were couples who were married, in which one spouse had mild Alzheimer’s disease (AD) with clinical dementia rating (CDR) of 0.5 (very mild) or 1 (mild). AD diagnosis and CDR rating were made prior to the recruitment by geropsychiatrists in the clinic of SNUBH using the tools in the Korean version of the Consortium to Establish a Registry for Alzheimer’s Disease (CERAD-K) assessment packet (Lee et al., 2002). Diagnosis was confirmed at a consensus committee meeting. CERAD-K assessment packet includes the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) criteria (American Psychiatric Association, 1994) which is used to diagnose dementia, and the assessment tool of the National Institute of Neurological and Communicative Communicative Disorders and Stroke and the Alzheimer’s Disease and Related Disorders Association (NINCDS-ADRDA; McKhann et al., 1984) which is used to diagnose AD. The criteria for exclusion for people with dementia included those who had any neurological disorders other than AD that could affect cognitive function, or any physical condition that could preclude regular attendance. SCG with cognitive or physical problems that were difficult to attend the sessions were excluded. Illiterate participants were also excluded.

During the recruitment, people with mild AD and their SCG at the outpatient clinics were first informed of the program, and if they showed an interest in participating, one of our researchers contacted them and explained the goals and the contents of the program. We recruited participants until we enroll 50 people with mild AD and their spouses (n = 100). All study participants were fully informed of the study protocol, and provided written informed consent, signed by themselves or their legal guardians. This study protocol was approved by the Institutional Review Board of SNUBH.

After enrolling, two couples were found to have already participated in our pilot study that was conducted in the previous year to develop a culturally sensitive CLSA-K. Because they participated in a similar program (structured life review), these participants were excluded from the current sample. In addition, 11 couples withdrew during the intervention due to reasons such as health problems (4 couples), people with dementia’s refusal to participate (4 couples), hearing problems (1 couple), difficulty in sharing personal stories (1 couple), and without any particular reason (1 couple). Remaining 37 couples (n = 74) completed the five-week intervention. In order to examine whether those who dropped out of the program significantly differ from the participants, we conducted t-tests and chi-square tests. We found that, among care-recipients, those who withdrew had higher age, higher depressive symptoms, and showed poorer subjective memory ratings than those who remained in the program (p < . 05). Among caregivers, those who withdrew had lower education and showed greater depressive symptoms than those who completed the intervention.

Study design

We collected quantitative data on people with dementia’s and their caregiving spouses’ mental health and their quality of marital relationships (e.g., frequency of communications and quality of the relationships) at three time points: one week before the intervention (T1), one week or shortly after the intervention (T2), and one month after the intervention (T3). Information on demographic characteristics of the study participants were obtained at T1. While 30 out of 37 couples responded to the questionnaire at all three time points, seven couples did not participate at the one-month follow-up, due to a move of residence (n = 1), health deterioration (n = 3), and refusals (n = 3). An additional analysis showed that the participants who did not participate in the T3 survey also had lower Mini-Mental State Examination (MMSE) score at T1 compared to those who were interviewed successfully at T3. Because a substantial number of participants did not participate in the survey at T3, and preliminary analyses did not yield any major differences in the findings when we included T3 data, in the current paper, we report analyses based on T1 and T2 data only (supplementary analyses using all three waves of data can be obtained from the first author).

Measures

Dependent variables

Our dependent variables include people with dementia’s and caregivers’ depression, two indicators of marital quality (i.e., talkativeness and dyadic mutuality), and caregivers’ perceived burden, assessed prior to and one week after the intervention. All assessments were conducted with the person with dementia and caregiver separated. Depression (α = .87) was assessed with a Korean version of the Geriatric Depression Scale (GDS; Jung, Kwak, Joe, & Lee, 1998), consisting of 15 items. Talkativeness (α = .78; Allen, Hilgeman, Ege, Shuster, & Burgio, 2008) was assessed with three question assessing how often the respondent talked with his/her spouse about their day or feelings in the past week. Response categories ranged from 1 (not at all) to 5 (very often). Mutuality scale (α = .95; Archbold & Stewart, 1986) was assessed with 15 items capturing how much the couple agrees on things, feels close to and enjoy talking with each other, helps each other, and provides emotional support. The respondents were asked how much they agree with each of the statements using a five-point scale.

Caregiving burden (α = 1.00; Bédard et al., 2001) was ascertained from the spouses only. It is a 12-item scale, including questions such as “Do you feel stress in helping the person you care for and meeting other family and work responsibilities?” “Do you feel that person you care for currently affects your relationship with other family members in a negative way?” Response categories ranged from 0 (never) to 4 (always), and the mean of 12 items were calculated to construct a summary score.

Independent and moderating variables

Our time variable captures whether there was a significant change in the outcome variables from pre- to post-intervention. In order to find out whether the pattern of change in dependent variables differs by people with dementia’s or caregivers’ characteristics, we assessed age (1 = 75 and over; 0 = under 75) and gender (1 = female, 0 = male) of the caregiver and the care-recipient. We also included cognitive functioning level of the care-recipient, assessed with the Korean version of the Mini-Mental State Examination for Dementia Screening (MMSE-DS; Kim et al., 2010) prior to the intervention. The score for MMSE-DS ranged from 8 to 29. The range of the MMSE-DS scores shows that there is still much variation in the level of global cognitive functioning despite the fact that the research participants were all diagnosed with mild dementia clinically. We further categorized these scores into three groups: good cognitive functioning (≥24), moderate cognitive impairment (scores between 18 and 23), and severe cognitive impairment (<18; Tombaugh & McIntyre, 1992).

Analysis plan

First, we presented sample characteristics. We then used repeated t-tests to examine the mean differences in the outcome variables assessed at T1 and T2. Next, we conducted a repeated measures analysis of variance using generalized linear models to examine the extent to which any changes in the outcome variables from pre- to post-intervention differ depending on caregivers’ and care-recipients’ characteristics.

Results

Sample characteristics

Table 1 presents the sample characteristics. The left panel shows the characteristics of the care-recipient sample, and the right panel shows those of the caregiver sample. The average age was 75.5 ± 5.5 for the care-recipient sample, and 74.2 ± 6.7 for the caregiver sample. The 40.5% of the care-recipients and 54.1% of caregivers had some college or more education. The average MMSE-DS score of care-recipients was 20.6 ± 5.5. When we categorized these scores into three categories, as noted in the measures section, 21.6% of the sample scored less than 18, 43.2% scored between 18 and 23, and 35.1% scored 24 and higher on the MMSE-DS test.

Table 1.

Sample characteristics.

	Care-recipients		Caregivers
	Mean or %	SD	Mean or %	SD
Gender
Male	51.4%		48.6%
Female	48.6%		51.4%
MMSE total score	20.6	5.5
MMSE categories
17 and under	21.6%
Between 18 and 23	64.9%
24 and over	35.1%
Age	75.5	5.5	74.2	6.7
Age group
75 and over	40.5%		48.6%
Under 75	59.5%		51.4%
Education
0–6 years	13.5%		16.2%
More than 6 to 12 years	46.0%		29.7%
More than 12 years (some college or more)	40.5%		54.1%

MMSE: Mini-Mental State Examination.

Table 2 shows the t-test statistics showing the mean differences between the T1 and T2 scores of the outcome variables. No significant changes in GDS or marital relationships were found from pre- to post-intervention. At T2, caregivers’ burden was significantly higher than at T1.

Table 2.

Mean differences in the Time 1 and Time 2 outcome variables.

	Time 1		Time 2		t-Statistics
	Mean	SD	Mean	SD	(T1 − T2)
Care-recipient outcomes
Geriatric Depression Scale (GDS)	3.38	3.90	3.41	3.70	−0.09
Mutuality	2.98	0.75	3.01	0.80	−0.43
Talkativeness	3.42	1.02	3.39	0.93	0.24
Caregiver outcomes
GDS	3.16	3.13	3.30	3.76	−0.31
Mutuality	2.49	1.08	2.49	1.07	−0.10
Talkativeness	3.23	0.90	3.32	0.86	−0.85
Burden	1.30	0.66	1.52	0.79	−2.41*

*p < .05.

Note: Repeated measure t-tests were conducted to examine the mean differences between Time 1 and Time 2.

Multivariate analyses

Next, we ran repeated measures generalized linear models (RM GLM) to examine the effects of time and other covariates on between- and within-subject differences in the outcome variables. RM GLM allows the analyses of change in outcome variables controlling for covariates. Also, it takes into account the fact that outcome measures at T1 and T2 are correlated and thus are not independent. We ran three models for care-recipient outcomes and four models for caregiver outcomes (for caregiver, an additional outcome varaiable—caregiver burden—was examined). Out of these seven models, four models showed significant or marginally significant within-subject variations by covariates.

First, in predicting care-recipient outcomes, models predicting talkativeness and mutuality showed marginally significant within-subject effects of the covariates. Table 3 shows the model predicting talkativeness of the care-recipients. Here, time effects were moderated by gender and age at the marginally significant level. Specifically, talkativeness declined after the intervention among female and older participants (aged 75+), whereas it increased among male and younger participants (see Figure 1). Regarding between-subject variations, women showed significantly higher levels of talkativeness than men.

Table 3.

Multivariate model predicting changes in care recipients’ talkativeness.

	SS	df	MS	F	p
Within-individual effects
Time	.000	1	.000	.001	.973
Time × female	1.553	1	1.553	4.001	.054
Time × cognition	.134	2	.067	.172	.843
Time × aged 75+	1.455	1	1.455	3.747	.062
Error (time)	12.426	32	.388
Between-individual effects
Intercept	766.181	1	766.181	574.800	.000
Female	9.057	1	9.057	6.794	.014
Cognition	.948	2	.474	.356	.703
Age (1 = aged 75+; 0 = between 65 and 74)	.634	1	.634	.476	.495
Error	42.654	32	1.333

Figure 1.

Changes in talkativeness by care-recipients’ gender and age.

In the model predicting the level of mutuality perceived by care-recipients (see Table 4), a marginally significant moderating effect of age was found. Mutuality increased among younger (age <75) participants, whereas it slightly decreased among older (aged 75+) participants. Gender explained between-subject variations at a marginally significant level. Women with dementia reported higher levels of mutuality compared to men with dementia.

Table 4.

Multivariate model predicting care-recipients' mutuality.

	SS	df	MS	F	p
Within-individual effects
Time	.157	1	.157	1.816	.187
Time × female	0.005	1	0.005	0.060	.808
Time × cognition	.411	2	.206	2.384	.108
Time × aged 75+	0.252	1	0.252	2.925	.097
Error (time)	2.760	32	.086
Between-individual effects
Intercept	610.278	1	610.278	541.833	.000
Female	3.631	1	3.631	3.224	.082
Cognition	.067	2	.034	.030	.971
Age (1 = aged 75+; 0 = between 65 and 74)	.107	1	.107	.095	.760
Error	36.042	32	1.126

Among caregiver outcomes, significant within-subject effects of the covariates were found in models predicting GDS and caregiving burden. In the model predicting caregivers’ depression (see Table 5), time itself did not have a significant effect, suggesting that there was no significant change in caregivers’ depression after the intervention. However, a marginally significant interaction effect between time and age was found. Specifically, older caregivers (aged 75+) showed a decrease in depression after the intervention, whereas younger caregivers showed an increase in depression. Regarding between-individual effects, female caregivers showed greater depression than male caregivers.

Table 5.

Multivariate model predicting caregivers' GDS.

	SS	df	MS	F	p
Within-individual effects
Time	.166	1	.166	.050	.825
Time × female	.322	1	.322	.096	.758
Time × cognition	4.426	2	2.213	.662	.523
Time × aged 75+	12.507	1	12.507	3.743	.062
Error (time)	106.933	32	3.342
Between-individual effects
Intercept	726.820	1	726.820	39.207	.000
Female	128.773	1	128.773	6.946	.013
Cognition	13.089	2	6.544	.353	.705
Age (1 = aged 75+; 0 = between 65 and 74)	5.606	1	5.606	.302	.586
Error	593.220	32	18.538

GDS: Geriatric Depression Scale.

Finally, Table 6 shows the model predicting caregivers’ burden. The effect of time differed by cognitive functioning status. Supplementary analysis showed that those who had a moderate cognitive impairment (18≤ MMSE <24) showed an increase in caregiving burden after the intervention, whereas other groups showed little change over time.

Table 6.

Multivariate model predicting caregivers' burden.

	SS	df	MS	F	p
Within-individual effects
Time	.532	1	.532	3.885	.057
Time × female	.003	1	.003	.021	.884
Time × cognition	1.241	2	.620	4.531	.019
Time × aged 75+	.057	1	.057	.413	.525
Error (time)	4.382	32	.137
Between-individual effects
Intercept	141.406	1	141.406	209.415	.000
Female	4.458	1	4.458	6.602	.015
Cognition	3.153	2	1.577	2.335	.113
Age (1 = aged 75+; 0 = between 65 and 74)	.447	1	.447	.662	.422
Error	21.608	32	.675

Discussion and implications

The results from our analyses of the CLSA-K, a five-week intervention for people with dementia and their spouses, were mixed. In most cases, caregivers did not dramatically change their mental health or marital relationships, but they maintained stability; however, their caregiver burden increased over time. For care recepients, a somewhat different picture emerged especially with respect to marital relationships for some specific subgroups. Here we will discuss these mixed outcomes, highlight the kinds of participants who benefitted most and least from this couple-based approach, and provide suggestions for future research and intervention.

One reason we did not see the expected changes for caregivers and care-recipients may be that benefits of the structured life-review program do not translate into general indicators of psychological well-being. Participants may have found that life review (a major component of this intervention) was meaningful and enjoyable; however, it may not remove the heavy caregiving burden from caregivers and the burden of disease from care-recipients. Also, since AD is progressive, stability—rather than decline—can be seen as a positive. Because dementia is so challenging for caregivers, interventions are usually more successful at decreasing participants’ depression than their sense of burden (Brodaty, Green, & Koschera, 2003). Further, since dementia is progressive, general decline in functioning is inevitable and CLSA-K may remind the participants of their losses (e.g., cognitive abilities) as well as the fact that they are getting older and weaker. However, it is important to note that some couples found this approach to be helpful (Kwak, Han, & Ha, 2018a). It may be that the measures used in this study did not capture the qualitative aspects of such meaningful engagement.

Another possible reason is the time frame of our intervention. Oftentimes, the positive effect of an intervention does not hold after the intervention because participants no longer have stimuli to engage in similar activities. If our intervention was provided over a longer time period, it may yield different findings.

A third was that there may have been a mismatch between the goals of the CLSA-K and the goals of the participants. During the recruitment process, many couples, including some of our participants, expressed greater interest in improving cognitive functions and receiving training for dementia care rather than enjoying activities shared with spouses or improving their marital relationship quality. Also, some caregiving spouses wanted to spend the intervention sessions getting information about dementia and learning skills to cope with behavioral symptoms. For these people, programs such as CLSA-K may not provide a direct benefit in decreasing burden and increasing marital quality. Instead, an intervention that combines education with life review would be more effective. Etters, Goodall, and Harrison (2008) in their review of the literature on caregiver burden found that “Although various interventions have been developed with the goal of alleviating CB [caregiver burden], evidence suggests that individually developed multicomponent interventions including a diversity of services will decrease burden, improve quality of life, and enable caregivers to provide at-home care for longer periods prior to institutionalization.” (p. 423).

Age and gender of the caregivers and care-recipients also seem to have played a role in the mixed results of this study. The younger care-recipients showed an increase in talkativeness after the intervention (Figure 1; lower panel), as did male care-recipients (Figure 1; upper panel). These are both positive results, as a goal of the CLSA-K is to increase the care-recipients’ ability to feel part of conversation, to have a voice in marital dialogues. Feelings of mutuality also increased among younger couples, an indication that this may be an effective intervention to test further in a younger cohort of couples. Male care-recipients also reported increased talkativeness after the intervention. These findings suggest that, with the help of a professional and a structured intervention, male participants and younger persons with dementia can increase their interactions with their spouse. Given that people with dementia get little opportunity to tell their narratives or maintain their previously held roles after the diagnosis (Cohen-Mansfield, Golander, & Arnheim, 2000), programs such as CLSA-K may provide important benefits to the care-recipients.

However, among caregivers, we found an opposite effect of age. Younger participants experienced an increase in depression following a five-week intervention. A possible explanation for this age difference is that younger caregivers are at a different point in their life trajectories and are less prepared to accept life with AD than are older caregivers. It may also be that older care-recipients, who had grown old in a more traditional Confucian society, may have had a more difficult time responding to a couple intervention, although there are several positive case examples reported in a previous article (Kwak et al., 2018b).

Our research also showed that the effect of the CLSA-K on caregivers differed depending on the level of global cognitive functioning of the care-recipient. Burden scores increased for those caregivers whose spouses had moderate cognitive impairment (MMSE scores between 18 and 23), which is not surprising as this stage of dementia is often the most challenging. In contrast, caregivers whose spouses had good cognitive functioning (≥24) or severe cognitive impairment (<18) showed little change in caregiver burden. It may be that caregivers of those with relatively good global cognitive functioning are not yet experiencing much burden and those whose spouses had more severe cognitive impairment may have already gone through a process of adjustment and thus the level of change in caregiving burden may be minimal. This finding also suggests that even though all our care-recipient sample had mild dementia, its implications for caregiving may differ depending on the people with dementia’s global cognitive functioning. Because we do not have a control group of people who did not participate in the CLSA-K, we cannot attribute this change solely to the effect of the intervention. However, similar to the effect of age in predicting caregiver’s depression, those who have a spouse with moderate level of impairment may be at a loss and experience difficulty adjusting to the daily hassles created by the disease. Also, acknowledging spouse’s declining cognitive ability and having to see their spouse’ difficulty in remembering their shared past may bring about much grief and pain among caregivers of people (living) with moderate AD. CLSA-K may not be as helpful as we expected at this stage of adjustment.

Limitations and future directions

Our study has a few limitations. First, because of the limited time and funding, our sample size is rather small. Further, we were not able to include a control group in our sample. Employment of an experimental or quasi-experimental design with a control group would have allowed us to examine the changes in our outcome variables among the program participants in comparison to the changes among the non-participants, thus providing a way to control for maturation effect in assessing the effectiveness of the program. With the current design, we were not able to find out whether the changes we saw among participants of the CLSA-K are due to the intervention or due to time or other factors. This warrants future studies with a more rigorous design such as the randomized control group design to assess the effectiveness of the couple-based approach for dementia care.

Another limitation is the lack of generalizability. Our research participants were recruited from a university hospital near the metropolitan Seoul area, and in a neighborhood with mostly middle- to high-income households. Thus, the sample may not represent older populations with lower socioeconomic status or people living in rural areas. More diverse sample with different socioeconomic background could yield different results.

Finally, the current cohort of older adults who participated in the intervention is from a generation that did not put much emphasis on marital quality or conversation between spouses. Many older adults have had economic hardship and worked hard to overcome it, sacrificing other opportunities such as doing activities or enjoying leisure time together. Further, many of the current cohorts of older adults were raised with a traditional belief that men and women have different responsibilities and that men should not show emotions. Thus, participating in a couple-based intervention may not have been a natural thing for our participants. For these older adults, a couples-oriented approach may need more time and/or the intervention needs to be paired with an educational component. However, baby boomers who are to become older adults in the next decade may show a very different response to a couple-based intervention such as ours. Future research should examine how these new cohorts of older adults respond to couple-based approach to dementia care and adapt the intervention in response to their unique needs.

Despite these limitations, our research is one of the first studies in Asia to develop a couple-based intervention for people with dementia and their caregivers and examine its effectiveness using longitudinal data. Given that prior intervention programs mostly focused on either the people with dementia or their caregivers separately, the need to consider couple-based interventions is imperative. Further, by examining the role of age, gender, and cognitive functioning level, we noted the important diversity among people with dementia and their caregivers. Based on our findings, clinicians should consider ways to tailor the intervention for people with different needs or find other ways to support those who may not be responsive to or benefit from couple-based interventions.

Footnotes

Acknowledgement

We would like to thank our research assistants and the study participants for their contribution.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: the Korea Health Industry Development Institute under Grant no. HI13C1652 (PI: Jung-Hwa Ha).

Jung-Hwa Ha is an associate professor at the Department of Social Welfare at Seoul National University in South Korea. Her research focuses on aging and the life course, widowhood, social relationships and support, end-of-life care, and dementia care.

Minyoung Kwak is an assistant professor at the Chinese University of Hong Kong Department of Social Work. Her research focuses on family care giving for older adults and the relationship between the receipt of informal care and mental health among older adults.

Ji Won Han is an assistant professor at the department of neuro psychiatry at the Seoul National University Bundang Hospital. Dr. Han's major field of practice and research is geriatric neuro psychiatry, focusing on Alzheimer’s disease and other dementia-related disorders. She has conducted research on prospective elderly cohort, identification of diagnostic biomarkers, and development of cognitive interventions for mild cognitive impairment and dementia.

Hyeon Jung Lee is an associate professor in the Department of Anthropology at Seoul National University. As a medical anthropologist, she has conducted research focusing on suicide and depression among Chinese female peasants, social suffering and psychosocial interventions after the sinking of MV Sewol in South Korea, and caring for the elderly with dementia in rural China and South Korea.

Berit Ingersoll-Dayton is a professor emerita of Social Work at the University of Michigan. She has conducted clinical research on programs for employed caregivers, reminiscence and forgiveness groups for the elderly, intergene rational family therapy, and interventions forolder adults with dementia and their partners. She has written numerous articles and book chapters and co-authored two books: Balancing Work and Care giving for Children, Adults and Elders and The Delicate Balance: Case Studies in Counseling and Care Management for Older Adults.

Beth Spencer, a geriatric social worker, has worked in the field of aging for forty-plus years, specializing in care giving and dementia care. She has held positions as a consultant inmemory care programs, as director of an adult day program, as a counselor and clinical social worker in a cognitive disorders clinic. In addition to research and teaching at several universities, she has co-authored several books including Coping with Behavior Change in Dementia: A Family Caregiver’s Guide.

Ki Woong Kim is an expert in geropsychiatry and serving as the director of the National Institute of Dementia and the president of the Korean Geriatric Psychoneuro pharmacology (KCGP). His research areas are early diagnosis and intervention in cognitive disorders(dementia and mild cognitive impairment) and late-life depression. He is leading two community-based elderly cohort projects in Korea (the Korean Longitudinal Study of Health and Aging and the Korean Longitudinal Study on Cognitive Aging and Dementia). Published more than 160 papers in peer-reviewed scientific journals, including Biological Psychiatry and Neurology and Stroke, and wrote 11 books on dementia and geriatric psychiatry.

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