*6.3.1 What exactly is 'care burden': a dimensional perspective*

One of the most researched constructs in care partner research is 'caregiver burden' [49]. Several different definitions have been proposed but two interwoven descriptions from the 1980s are used concurrently to this day. George and Gwyther [113], p. 253, define burden as 'the physical, psychological or emotional, social, and financial problems that can be experienced by family members caring for impaired older adults'. The same year, Zarit et al. [87], p. 261, proposed a very similar explanation adding that burden is 'the extent to which caregivers perceive their emotional or physical health, social life, and financial status as suffering as a result of caring for their relative'. Even though both explanations encompass the multifaceted impact on care partners, the definitions of burden are still diverse, incoherent and vague in many research studies making measuring 'burden' ambiguous [102, 114]. The authors recommend that burden should be defined clearly, researched using mixed methods (i.e. both quantitatively and qualitatively) and evaluated as specific dimensions of burden [102, 114].

In PD, several different terms exist to refer to burden, for instance *strain* [77, 96, 115, 116], *stress* [117] and *distress* [96, 118]. Despite the fact that these terms have been used instead of burden or in conjunction with burden [84], recent studies have determined that these constructs are independent from burden and are evaluated as separate constructs [72, 76, 84, 119].

One of the most frequently used validated measures of care partner burden is the ZBI [87] which considers 'burden' as a unitary concept. However, burden is highly complex and most likely comprises several dimensions, which have been explored in DLB [120] but not in PDD and DLB jointly. Thus, we undertook a study to explore the factor structure of the ZBI, specifically in life partners of people with PDD or DLB, and to examine the relationships among the emerging factors and the demographic and clinical features in this sample.

In this study [121], we undertook an exploratory factor analysis of the ZBI (principal axis factoring) with 127 life partners. This revealed five burden dimensions: social and psychological constraints, personal strain, interference with personal life, concerns about future, and guilt. These burden factors were associated with lower relationship satisfaction, mental health, and resilience, and higher stress, anxiety, depression, resentment, negative strain and people with PDD/DLB motor severity. In multiple linear regression analyses, where each factor score was the dependent variable, stress, negative strain and resentment emerged as significant predictors of specific burden dimensions. We concluded that burden in PDD and DLB, like in PD in general, is a complex and multidimensional construct and interventions supporting care partners should address specific types of burden to optimise outcomes such as quality of life.

#### *6.3.2 What exactly is 'care burden: life partners' perspectives*

To fully explore the meaning of 'care burden' experienced by life partners in the context of PDD and DLB, it is important to go beyond quantitative ratings of burden with typical rating scales such as the ZBI. To address this, we undertook a qualitative study of 12 female life partners of people with PDD and DLB to understand more fully how relationships change as cognition declines in PD [122].

In this study, we undertook semi-structured interviews using a face-to-face format and analysed the outputs using the thematic analysis approach. Our analysis revealed three important, and interlinked, themes: changes in the marital relationship, challenges in providing care, and acceptance and adjustment of the situation, which are discussed below. This study has provided key insights into the changes in long-term marital relationships as dementia progresses in Parkinson's disease.

The theme of 'altered relationship' revealed that the female life partners felt that their relationship satisfaction had decreased as a result of progression in their partners' condition. This was closely linked with partners' reduced ability to communicate and the transition in role for the life partners. Alongside reduced relationship satisfaction, global intimacy as well as emotional, social, recreational, intellectual, physical and sexual intimacies had altered and resulted in life partners feeling emotionally distanced from their partner despite spending more time together. The notion of being physically closer but feeling emotionally further away from their partner was recognised by most life partners in the interviews. This 'emotional disconnection' has been described in the field of dementia [123], as well as the term 'married widowhood' [124, 125]; however, the 'physical closeness' due to day-to-day management of the condition was a finding that emerged in this study, which illustrated the unique challenges that LBD poses in this population.

The second theme, 'care partner challenges' emerged from the complex nature of the motor and non-motor symptoms of LBD as care recipients had lost skills and

**45**

PD-MCI, PDD and DLB.

*6.4.1 Study of care partner characteristics in LBD*

*Long-Term Partnerships in Lewy Body Dementias DOI: http://dx.doi.org/10.5772/intechopen.86204*

abilities to do things they were once capable of doing, which in turn increased life partners' responsibilities. Some life partners described they had a dual role in the marriage by being both the man and the woman in the relationship and managing the household, finances, maintenance, car which used to be their spouses' duty. These findings are consistent with previous studies with life partners of people with dementia where life partners took on additional responsibilities while providing care to their partners [123, 126–128]. The increase of care-related responsibilities due to the care recipients' condition was accompanied with an increase in negative feelings and took its toll on life partners. In particular, the time, freedom and independence of wives had reduced to the point of 'losing own life' and becoming mentally and physically weary. As a result of regular care provision, support and surveillance to their partners, wives felt a myriad of feelings such as resentment, frustration, annoy-

ance, sadness, grief, despair, disappointment, guilt, distress and worry.

**6.4 The influence of LBD on care partner outcomes**

Finally, the third theme to emerge, 'acceptance and adjustment', captured life partners' acceptance of care provision as part of their marital contract and saw it inseparable from their commitments to the relationship with their partner. In spite of the challenges, difficulties and negative feelings that wives experienced and confronted with due to providing care, they revealed feelings of love, compassion, empathy and sympathy towards their partner. People with DLB had cared for their wives throughout their married life when they needed help due to health ailments and this reciprocity was acknowledged by life partners who felt they had to reciprocate the care for as long as they could. Life partners in this study and in other qualitative studies were committed to their marital vows and held onto the 'in sickness and in health, till death do us apart' but there was also some confusion whether the marriage still existed as dementia progressed [129–132]. Notwithstanding the conflict between existence and loss of relationship, life partners felt committed to their partners and were willing to continue providing care to their spouse in the future.

Comparative studies between care partners of people with different neurodegenerative conditions have shown important distinctions. In one study, burden in care partners was higher in PDD compared to AD, with neuropsychiatric disturbances fundamentally contributing to burden in care partners of people with PDD [133]. Another study supported these findings and added that care partners of people with PDD experienced more depression, lower satisfaction with life and needed more help and assistance compared to care partners of people with PD and AD [101]. Similarly, care partners of people with DLB had higher burden [134] and distress [135, 136] compared to care partners of people with AD and frontotemporal lobar degeneration [137] due to more prominent neuropsychiatric symptoms in DLB. Care partners of both people with PDD and DLB also experienced higher levels of stress compared to AD and vascular dementia [138]. To examine this issue further, we undertook a study comparing the characteristics of care partners in three groups of people with different clinical profiles of Parkinson's-related cognitive impairment:

In our study [139] we aimed to describe the sociodemographic and clinical profile of life partners of people with different cognitive syndromes in LBD, including physical and mental health, burden, stress, quality of life and feelings related to care provision, and compare life partners' outcomes according to the clinical syndrome (PD-MCI, PDD or DLB). The study involved a cross-sectional assessment battery

#### *Long-Term Partnerships in Lewy Body Dementias DOI: http://dx.doi.org/10.5772/intechopen.86204*

*Geriatric Medicine and Gerontology*

separate constructs [72, 76, 84, 119].

demographic and clinical features in this sample.

optimise outcomes such as quality of life.

*6.3.2 What exactly is 'care burden: life partners' perspectives*

In PD, several different terms exist to refer to burden, for instance *strain* [77, 96, 115, 116], *stress* [117] and *distress* [96, 118]. Despite the fact that these terms have been used instead of burden or in conjunction with burden [84], recent studies have determined that these constructs are independent from burden and are evaluated as

One of the most frequently used validated measures of care partner burden is the ZBI [87] which considers 'burden' as a unitary concept. However, burden is highly complex and most likely comprises several dimensions, which have been explored in DLB [120] but not in PDD and DLB jointly. Thus, we undertook a study to explore the factor structure of the ZBI, specifically in life partners of people with PDD or DLB, and to examine the relationships among the emerging factors and the

In this study [121], we undertook an exploratory factor analysis of the ZBI (principal axis factoring) with 127 life partners. This revealed five burden dimensions: social and psychological constraints, personal strain, interference with personal life, concerns about future, and guilt. These burden factors were associated with lower relationship satisfaction, mental health, and resilience, and higher stress, anxiety, depression, resentment, negative strain and people with PDD/DLB motor severity. In multiple linear regression analyses, where each factor score was the dependent variable, stress, negative strain and resentment emerged as significant predictors of specific burden dimensions. We concluded that burden in PDD and DLB, like in PD in general, is a complex and multidimensional construct and interventions supporting care partners should address specific types of burden to

To fully explore the meaning of 'care burden' experienced by life partners in the context of PDD and DLB, it is important to go beyond quantitative ratings of burden with typical rating scales such as the ZBI. To address this, we undertook a qualitative study of 12 female life partners of people with PDD and DLB to understand more fully how relationships change as cognition declines in PD [122]. In this study, we undertook semi-structured interviews using a face-to-face format and analysed the outputs using the thematic analysis approach. Our analysis revealed three important, and interlinked, themes: changes in the marital relationship, challenges in providing care, and acceptance and adjustment of the situation, which are discussed below. This study has provided key insights into the changes in long-term marital relationships as dementia progresses in Parkinson's disease. The theme of 'altered relationship' revealed that the female life partners felt that their relationship satisfaction had decreased as a result of progression in their partners' condition. This was closely linked with partners' reduced ability to communicate and the transition in role for the life partners. Alongside reduced relationship satisfaction, global intimacy as well as emotional, social, recreational, intellectual, physical and sexual intimacies had altered and resulted in life partners feeling emotionally distanced from their partner despite spending more time together. The notion of being physically closer but feeling emotionally further away from their partner was recognised by most life partners in the interviews. This 'emotional disconnection' has been described in the field of dementia [123], as well as the term 'married widowhood' [124, 125]; however, the 'physical closeness' due to day-to-day management of the condition was a finding that emerged in this study,

which illustrated the unique challenges that LBD poses in this population.

The second theme, 'care partner challenges' emerged from the complex nature of the motor and non-motor symptoms of LBD as care recipients had lost skills and

**44**

abilities to do things they were once capable of doing, which in turn increased life partners' responsibilities. Some life partners described they had a dual role in the marriage by being both the man and the woman in the relationship and managing the household, finances, maintenance, car which used to be their spouses' duty. These findings are consistent with previous studies with life partners of people with dementia where life partners took on additional responsibilities while providing care to their partners [123, 126–128]. The increase of care-related responsibilities due to the care recipients' condition was accompanied with an increase in negative feelings and took its toll on life partners. In particular, the time, freedom and independence of wives had reduced to the point of 'losing own life' and becoming mentally and physically weary. As a result of regular care provision, support and surveillance to their partners, wives felt a myriad of feelings such as resentment, frustration, annoyance, sadness, grief, despair, disappointment, guilt, distress and worry.

Finally, the third theme to emerge, 'acceptance and adjustment', captured life partners' acceptance of care provision as part of their marital contract and saw it inseparable from their commitments to the relationship with their partner. In spite of the challenges, difficulties and negative feelings that wives experienced and confronted with due to providing care, they revealed feelings of love, compassion, empathy and sympathy towards their partner. People with DLB had cared for their wives throughout their married life when they needed help due to health ailments and this reciprocity was acknowledged by life partners who felt they had to reciprocate the care for as long as they could. Life partners in this study and in other qualitative studies were committed to their marital vows and held onto the 'in sickness and in health, till death do us apart' but there was also some confusion whether the marriage still existed as dementia progressed [129–132]. Notwithstanding the conflict between existence and loss of relationship, life partners felt committed to their partners and were willing to continue providing care to their spouse in the future.

#### **6.4 The influence of LBD on care partner outcomes**

Comparative studies between care partners of people with different neurodegenerative conditions have shown important distinctions. In one study, burden in care partners was higher in PDD compared to AD, with neuropsychiatric disturbances fundamentally contributing to burden in care partners of people with PDD [133]. Another study supported these findings and added that care partners of people with PDD experienced more depression, lower satisfaction with life and needed more help and assistance compared to care partners of people with PD and AD [101]. Similarly, care partners of people with DLB had higher burden [134] and distress [135, 136] compared to care partners of people with AD and frontotemporal lobar degeneration [137] due to more prominent neuropsychiatric symptoms in DLB. Care partners of both people with PDD and DLB also experienced higher levels of stress compared to AD and vascular dementia [138]. To examine this issue further, we undertook a study comparing the characteristics of care partners in three groups of people with different clinical profiles of Parkinson's-related cognitive impairment: PD-MCI, PDD and DLB.

#### *6.4.1 Study of care partner characteristics in LBD*

In our study [139] we aimed to describe the sociodemographic and clinical profile of life partners of people with different cognitive syndromes in LBD, including physical and mental health, burden, stress, quality of life and feelings related to care provision, and compare life partners' outcomes according to the clinical syndrome (PD-MCI, PDD or DLB). The study involved a cross-sectional assessment battery

undertaken by 136 co-resident life partners who completed ratings of overall mental well-being, anxiety, depression, burden, stress and aspects of the relationship such as satisfaction. We found that the majority of participants were women (85%), with a mean age of 69 years (SD = 7.62; range 48–85 years) who had been in an intimate relationship for a median of 45 years. Life partners had provided care for between 0 and 20 years (median = 4; IQR = 2–7) and at the time of the study, were currently providing care between 0 and 168 hours per week (median = 84; IQR = 38.5–168). Nearly half of the participants (46.0%) provided over 100 hours of care per week.

Our assessments revealed that over 25% of the life partners were experiencing clinically significant anxiety and over 10% were experiencing significant depression, as per cut-off scores on the Hospital Anxiety and Depression Scale [140]. Findings on the Relatives' Stress scale [141] and the Zarit Burden Interview (ZBI) [87] revealed that nearly 60% of participants were experiencing significant stress and over 30% were experiencing significant burden. About 60% of life partners reported dissatisfaction with the relationship, as determined by the Relationship Satisfaction Scale [142] and slightly fewer than half reported quality of life that was lower than 'good', as per the EQ-5D index scores and visual analogue scale [143]. Overall, the majority of caregiving life partners reported satisfaction with their caring role; however, over 60% of life partners displayed resentment (63%) and over 30% anger in relation to this role (measured with the Family Caregiving Role Scale, [144]).

These findings of high levels of burden, stress and feelings of resentment and anger among life partners resonated with earlier findings of high levels of stress, burden and quality of life among care partners of people with PD, PDD, and DLB [5, 39, 72, 78, 145]. However, relationship dissatisfaction, perceived negative feelings, such as resentment, and resilience are new findings emerging from this study and appear to be under-researched in the field of LBD, despite numerous studies evaluating these constructs in other types of dementia [129, 146, 147]. This is important as it could be hypothesised that care partner outcomes could be similar in LBD and other types of dementia, but evidence suggests that rates of burden, stress, depression, as well as physical health outcomes are worse in partners of people with PDD and DLB compared to other forms of dementia [101, 133, 134, 136, 138]. Furthermore, tensions and arguments in the dyadic relationship [126] and lower abilities to live well [148] appear in PDD and DLB care partners, compared to care partners of people with AD and/or vascular dementia. This suggests that care partners of people with PDD or DLB may require more support. Importantly, our finding that care provision by over half of life partners exceeded 14 hours each day and over 100 hours each week, which is significantly higher compared to the rest of care partners in the UK [149], emphasised the complexity of providing care for a person with PDD or DLB as well as the immense commitment by life partners in providing the care.

Furthermore, we found that characteristics of life partners differed according to the clinical profile of the care recipient [139]. As expected, life partners of people with PDD had provided care for more years than life partners of people with PD-MCI, and life partners of people with PDD and DLB were providing more hours of care each week than life partners of people with PD-MCI. A linear relationship was found between several variables and progression of cognitive impairment in PD. Once dementia in PD had emerged, life partners were more burdened, stressed, depressed, resentful, dissatisfied with the relationship and experienced fewer positive interactions with their partner compared to those whose partner had PD-MCI. Similarly to PDD, life partners of people with DLB had higher rates of depression, burden and feelings of resentment in comparison to life partners of people with PD-MCI. Importantly, life partners of people with DLB had higher

**47**

*Long-Term Partnerships in Lewy Body Dementias DOI: http://dx.doi.org/10.5772/intechopen.86204*

in determining life partner outcomes.

**7. Overview of dyadic relationships**

with the relationship [154].

**8. Dyadic relationships in LBD**

anxiety levels and reported lower levels of mental health compared to life partners of people with PD-MCI, whereas these outcomes did not differ between PD-MCI and PDD groups, suggesting that specific clinical syndrome plays an important role

*Relationship quality* is a multifactorial construct and can be broken down into overall satisfaction, commitment, closeness or intimacy, passion, trust and love [150]. Spanier [151], p. 290, defined relationship quality as 'a subjective evaluation of a married couple's relationship with the range of evaluations constituting a continuum reflecting numerous characteristics of marital interaction and marital functioning'. In the context of marriage, relationship quality encompasses adjustment, satisfaction, integration and happiness and can be seen in terms of its functionality and how the partners are affected by its functioning [151].

*Relationship satisfaction* is one of the key components of relationship quality. It has been defined in the context of interdependence theory [152, 153], which sees the interaction between partners, dependence and satisfaction as the core elements in close intimate relationships [154]. The dyadic *interaction* consists of rewards (i.e. pleasure, enjoyment, fulfilment) as well as costs (i.e. stress, pain, shame) that each partner may receive in the relationship. The goal is to minimise costs and maximise rewards [154]. Relationship satisfaction is affected by the level of one partner fulfilling the most significant needs of the other partner [155]. Each individual assesses the gains and benefits in their relationship as well as outputs they give to their partner. Relationship satisfaction is higher when the input-outcome ratio equates with that of the partner, whereas an imbalance in the ratio leads to dissatisfaction

Both dementia and PD have a profound effect on the person, the care partner and their relationship [156]. People with PD have reported significant reduction in sexual functions, although the non-sexual relationship aspects, for example talking about one's feelings or tenderness, increased with the duration of the disease [157]. Men with PD tend to withdraw from the relationship, may have had increased thoughts of divorce and may have reported dissatisfaction with the relationship and sexuality since the onset of PD, more so than women with PD [157]. Mutuality, defined as the positive quality of a partnership consisting of love and affection, reciprocity, shared values and shared pleasurable activities [158], remains relatively high at mild to moderate stages of PD but can be significantly lower at an advanced stage of PD [83, 159]. Likewise, in another study, both partners' mutuality levels were similar but people with PD reported higher reciprocity than their partners [159]. Mutuality, alongside with non-motor symptoms, was also found to be a predictor of health-related quality of life for people with PD, whereas mutuality and cognition were the main predictors of burden in life partners [159]. These studies

The advancing nature of dementia increases the person's memory loss, confusion, agitation and inability to communicate, which may lead them to not recognising one's partner and forgetting that they are married [129]. As a consequence, the life partner might start to doubt whether the marriage still exists [129]. Thus, the central theme describing relationships within dementia is often 'loss'–loss of a

highlight that the impact of PD on the couple is substantial.

*Geriatric Medicine and Gerontology*

Caregiving Role Scale, [144]).

undertaken by 136 co-resident life partners who completed ratings of overall mental well-being, anxiety, depression, burden, stress and aspects of the relationship such as satisfaction. We found that the majority of participants were women (85%), with a mean age of 69 years (SD = 7.62; range 48–85 years) who had been in an intimate relationship for a median of 45 years. Life partners had provided care for between 0 and 20 years (median = 4; IQR = 2–7) and at the time of the study, were currently providing care between 0 and 168 hours per week (median = 84; IQR = 38.5–168). Nearly half of the participants (46.0%) provided over 100 hours of care per week. Our assessments revealed that over 25% of the life partners were experiencing clinically significant anxiety and over 10% were experiencing significant depression, as per cut-off scores on the Hospital Anxiety and Depression Scale [140]. Findings on the Relatives' Stress scale [141] and the Zarit Burden Interview (ZBI) [87] revealed that nearly 60% of participants were experiencing significant stress and over 30% were experiencing significant burden. About 60% of life partners reported dissatisfaction with the relationship, as determined by the Relationship Satisfaction Scale [142] and slightly fewer than half reported quality of life that was lower than 'good', as per the EQ-5D index scores and visual analogue scale [143]. Overall, the majority of caregiving life partners reported satisfaction with their caring role; however, over 60% of life partners displayed resentment (63%) and over 30% anger in relation to this role (measured with the Family

These findings of high levels of burden, stress and feelings of resentment and anger among life partners resonated with earlier findings of high levels of stress, burden and quality of life among care partners of people with PD, PDD, and DLB [5, 39, 72, 78, 145]. However, relationship dissatisfaction, perceived negative feelings, such as resentment, and resilience are new findings emerging from this study and appear to be under-researched in the field of LBD, despite numerous studies evaluating these constructs in other types of dementia [129, 146, 147]. This is important as it could be hypothesised that care partner outcomes could be similar in LBD and other types of dementia, but evidence suggests that rates of burden, stress, depression, as well as physical health outcomes are worse in partners of people with PDD and DLB compared to other forms of dementia [101, 133, 134, 136, 138]. Furthermore, tensions and arguments in the dyadic relationship [126] and lower abilities to live well [148] appear in PDD and DLB care partners, compared to care partners of people with AD and/or vascular dementia. This suggests that care partners of people with PDD or DLB may require more support. Importantly, our finding that care provision by over half of life partners exceeded 14 hours each day and over 100 hours each week, which is significantly higher compared to the rest of care partners in the UK [149], emphasised the complexity of providing care for a person with PDD or DLB as well as the immense commitment by life partners in

Furthermore, we found that characteristics of life partners differed according to the clinical profile of the care recipient [139]. As expected, life partners of people with PDD had provided care for more years than life partners of people with PD-MCI, and life partners of people with PDD and DLB were providing more hours of care each week than life partners of people with PD-MCI. A linear relationship was found between several variables and progression of cognitive impairment in PD. Once dementia in PD had emerged, life partners were more burdened, stressed, depressed, resentful, dissatisfied with the relationship and experienced fewer positive interactions with their partner compared to those whose partner had PD-MCI. Similarly to PDD, life partners of people with DLB had higher rates of depression, burden and feelings of resentment in comparison to life partners of people with PD-MCI. Importantly, life partners of people with DLB had higher

**46**

providing the care.

anxiety levels and reported lower levels of mental health compared to life partners of people with PD-MCI, whereas these outcomes did not differ between PD-MCI and PDD groups, suggesting that specific clinical syndrome plays an important role in determining life partner outcomes.
