Disease Burden in Caregivers of ALS Patients

It has been established that caregivers play a significant role in the treatment and support of people with Amyotrophic Lateral Sclerosis (ALS). With a lot of concern, however, the recognition, acknowledgement and sense of gratitude has not been accorded much regard by researchers. Caregiver burden affects the physical, psychological and emotional well-being of the caregiver.

It has been noted that caregiver burden is often associated with ALS but hardly explored in depth in ALS. There is need to look into the multidimensional nature of caregiver burden in ALS through the use of quantitative and qualitative data. This will lead to an increase in the information available for analysis pertaining to caregiver burden and ALS.

More on ALS

ALS is a neurological disorder that affects the motor system in the patient’s body. It now recognised as a multisystem neurodegenerative disease attributed to the fact that other regions rather than motor areas of the brain undergo degeneration. It damages the physical, communication and cognitive functioning of patients.

As is stands, medical research has not been able to establish with certainty why ALS occurs. In some cases, the disease is inherited, that is Familial ALS and on the other hand Sporadic ALS occurs randomly in the population.

The ALS features of the disease eventually render patients unable to stand, walk or use their hands and legs. It is known to commence with muscle twitching and weakness in the limbs and slurred speech. With time, it affects control of the muscles necessary for movement, speaking, eating, swallowing and breathing.

Currently, there exists no  treatment that can cure ALS. The management of the disease is palliative in its nature whereby treatment consists of alleviating symptoms. It is also geared towards maximising on quality of life and reducing the burden of disease for patients and caregivers.

Caregiving for ALS

Taking care of ALS patients majorly occurs at the community level. The immediate family and relatives of the patient are the most significant when it comes to ALS care and making medical decisions.

It has been seen that, taking care of a partner with a neurological disease such as ALS, is a source of burden and cause psychological distress with reduced quality of life. In addition, the time that is incurred in extending care and the duties of the caregiver basically increase as the diseases advances.
The caregivers are faced with changes in their personal habits and lifestyle both short term and long term. Consequently, an elevation in disabilities, levels of dependency and reconfiguration in the care giving relationship take place.

ALS patients experience physical, cognitive and behavioural impairments which can be attributed to the physical and psychological morbidity of the caregiver and impact caregiver burden in the disease.
The effects established on the caregiver’s health can be regulated by individual disparities seen in resources and vulnerabilities, social and economic position, prior health status, and level of social support in the community.

Conducting the Study

A recent study was done that lay emphasis on the long-term effects of caregiving on those who are responsible for taking care of ALS patients. It featured how ALS impacts on both patients and those who extend care to them.

The purpose of the analysis was to describe an informal caregiver cohort, their subjective assessment of burden and challenges experienced as a result of providing care to people with ALS. The report gave more information on caregiving in ALS and mixed methods approach to study the burden and was published in the BMC Palliative Care journal.

The research team was led by Miriam Galvin from Dublin City University who was part of the School of Nursing and Human Sciences. The team sought to shed light on the burdens and the types of challenges that the caregivers of ALS patients go through.

In the study caregiver participants were recruited as part of the assessment of patients and their associated informal caregivers seeking clinical care from a specialist multidisciplinary ALS clinic at Beaumont Hospital in Dublin.

The investigators therefore mobilized 81 caregivers of which the majority were women at 70 percent, spouses of ALS patients comprising of 72 percent or adult children of the ALS patients at 22 percent. They provided both quantitative and qualitative data at the baseline interview, that took between May 2013 and November 2014.

This cohort of participants was reported to be providing care to ALS patients who were both newly diagnosed, and at different stages in the disease progression. This meant that there was notable difference in duration of disease and implications for caregivers that were related to it.

It was established that 83 percent of all caregivers lived with the ALS patient for whom they cared for. The average age of the informal caregivers was 55 years, ranging from 25 to 76 years. Among them 32 percent had finished their higher education studies. Caregivers spent an average of 47 hours per week providing care. Also, 44 percent were working at the time of the interview, and 85 percent talked about their own health as ranging from good to excellent.

Some of the interviews were done during visits to the clinic but most occurred in participants’ own homes, with the caregiver and researcher present. Each interview lasted on average one hour. Confidentiality and anonymity were adhered to in conducting the study.

The participants were interviewed by use of open-ended questions with the sole objective of elaborating on the burden to caregivers. They evaluated the psychological distress and burden and singled out the details involved in caregiving that presented the most difficulties. The Zarit Burden Interview (ZBI) is a self-report instrument and assesses burden associated with an ALS patient’s behaviour and functional impairment and the impact of caregiving on caregivers’ lives in aspects such as health, relationships and finances. The higher the total score on a scale of 0–88, the higher the level of perceived burden for caregivers.

By employing a mixed method analysis which went over and above use of both qualitative and quantitative techniques the researchers were able to establish progress in the study. This approach was deemed appropriate in generating a variety of data in that would not be accessible using quantitative or qualitative methods solely.

The mixed methods of data collection and analysis sought a comprehensive assessment of burden and difficulties linked to informal caregiving in ALS. As part of a semi-structured interview a series of standardised measures were used to assess quality of life, psychological distress and subjective burden for caregivers.

They pointed out common outcomes consisting of lower life quality, distress in psychological sense and long periods of time spent in caregiving ranging from physical duties such as facilitating mobility to giving personal care. To add on, other impacts that were observed were changes and hindrances to maintaining good relationships as a result of the practical limitations associated with caregiving.

The responses analysed in the study were inclined towards the higher frequencies for issues such as fear, dependency, and balancing responsibilities. It was reported that 73 percent of caregivers mentioned that they were afraid of what the future holds for their relative suffering from ALS quite often and nearly always. Similarly, 62 percent of respondents felt their relative suffering from ALS portrayed high dependency on them as caregivers.

Strain of Caregivers

The burden for each and every caregiver consisted of different proportions of:

• Role Strain which was associated with feeling the patient is dependent on the caregiver, their social life has suffered accompanied by loss of control of own life since the diagnosis and onset of ALS symptoms.
• Personal Strain which related to anger, discomfort, tension, and embarrassment experienced by the caregiver when caring for the ALS patient.
• Guilt which was linked to the constant feeling that as a caregiver they should be exerting themselves more and doing a better job in caring for the ALS patient.

It was discovered that some caregivers were left to cope with lack of freedom, time constraints and unending responsibility. Additionally, others mentioned a loss of self-identity and self-perception due to the demands that accompanied caregiving.

Going by reports, emotional imbalances were prevalent and impacted on the caregivers’ mental and social health. The quantitative data show that psychological distress, increased hours of care provided and lower quality of life all of which were significant predictors of caregiver burden.

Caregiver Experiences

Following the study where caregivers were presented with open-ended questions about difficult aspects of caregiving. Some reported that for them there was not much that was difficult regarding caregiving, or that the ALS patient was not in need of care, and others felt they were coping in their situation at the time.

Based on the qualitative data, the caregiving difficulties were centred around the following four themes:

• Managing the practicalities of the ALS condition – the challenges encountered in dealing with and managing a rapidly progressing neurological condition was associated to the ALS patient’s functional status, personality, overall behaviour, communication difficulties, use of aids and devices and additional caregiving responsibilities that were necessary. Due to the increased level of physical demands on the caregiver, physical effort was required too.
• Impact on emotional and psychosocial well-being – the participants reported that they coped with anger, worry, stress, fear, frustration and uncertainty surrounding caring for ALS patients. Frustration arose due to the inability to restore previous quality of life of the ALS patient and limited communication with them. The emotional aspects of providing care were portrayed to be occasionally more difficult than the physical ones. Stress was due to the lack of acknowledgement for efforts made by the caregiver leaving them be both resentful and hurt. This was in addition to sense of uncertainty and fear about the future over their own capabilities as a caregiver and lack of assurance if the care provided is was satisfactory for the ALS patient.
• Challenges in limitation and restriction – The unending and often time-delimited course of ALS is mirrored in providing care as being a caregiver can be restrictive in time and place. The increased demands on time, render it a limited and restricted resource, time is taken from the caregiver and given to the patient. In this respect, caregiving responsibilities, more so for adult children or other relatives who provide care were subject to competing with their work engagements and other family commitments.
• Effects on relationships – the provision of care and taking up the role of caregiver impacts on relationships and can be attributed to changing family dynamics. This is in addition to the manner in which caregivers relate to other people and to themselves. The identity, role change and role reversal can be accompanied by a change in how the caregiver sees perceives themselves.

Conclusions from the Study

The researchers observed that detailed understanding of caregiver burden in ALS is vital. The collection and analysis of quantitative and qualitative data better explores the complexity of caregiver burden in ALS. Comprehending the elements of burden and the challenges encountered due to caring for an ALS patient would facilitate better support towards the caregiver. In this respect, it would also be possible to establish and deal with the impact of burden on the caregiver.

Based on the findings from the study, the researchers noted that ALS patients as well as their partners go through loss. It was further demonstrated that loss for caregivers comprises of empathy due to the loss experienced by the ALS patient, the loss of time to themselves and the loss in the restructuring of the ALS patient-caregiver relationship.

The subjection to suffering of a loved one suffering from the disease could directly affect and influence the caregiver’s ability to relate to experiences. This would lead to poor psychological and physical health altogether.

The exposure of assumptions and contradictions surrounding caregiver burden can aid specialists of ALS in looking into interventions on certain aspects which can vary with the caregiving situation. A comprehensive understanding of burden and the difficulties experienced is important for caregiver well-being at personal and existential levels.

The researchers concluded that, an increased understanding of the components of caregiver burden and experiences of caring allows the opportunity for better supporting the caregiver. This will also enable assessing the care environment and the impact on the ALS patient.