Challenges of caregiving to neurological patients

Neurological disorders prevail in old age, but may also manifest during childhood, adolescence, young adult age, or in midlife, such as multiple sclerosis, cerebral and spinal neoplasms, Huntington’s disease, traumatic brain injury, and neuromuscular and chronic pain disorders. Parkinsonian syndromes, stroke, and dementia usually occur in late life. Onset, course, degree, and type of dependence and need for care, and thus CB, differ between diagnoses, age at disease onset, sex, and the presence of dementia and behavioral abnormalities [5]. CB mainly depends on patient- and diagnosis-related factors; moreover, on educational and socioeconomic factors of the patient, the relationship between the client and the CG, professional and financial support, and the presence of a network of family members who contribute to care. CG-related factors of CB, such as age, sex, health status, and education are often underestimated or neglected [6, 7]. CB is mainly subjective; however, objective criteria of CB exist, such as daily duration of care, quality of sleep at night, psychological and somatic input, body mass index of the patient, degree of dependence, severity of cognitive and behavioral impairments, socioeconomic aspects, and support by other persons, etc. Both objective and subjective criteria of CB should be assessed systematically and incorporated in future concepts of public allowances.

In most societies, care is mainly provided by family members—partners, daughters or daughters-in law, sons, and also parents, siblings, or more distant relatives or friends [1‐4, 7]—mostly by women and mostly in the homes of the patients or in the household of the CG as long as care is manageable [29]. Apart from specific diagnoses, old age and male sex, body weight and height, impairment of mobility and impairments of ADL, dependence, cognitive decline, and neuropsychiatric and behavioral symptoms are important factors of CB [1‐4, 7]. Frontal dysexecutive disorders (loss of insight, reasoning, logical thinking, etc.), behavioral impairment (hyperactivity or apathy, aggression, disinhibition), and neuropsychiatric symptoms such as irritability, anxiety, or depression, paranoic ideation and hallucinations, and communication difficulties are important factors of CB [5, 7, 25, 26, 29‐32]. They may attenuate in late phases of dementing illnesses. Neuropsychiatric symptoms are frequent in dementias, mainly in dementia related to Parkinson’s disease, dementia with Lewy bodies, atypical parkinsonian syndromes (corticobasal syndrome and progressive supranuclear palsy), and frontotemporal dementia. Neuropsychiatric symptoms may vary and occur abruptly. Pharmacotherapy and psychoeducative measures are helpful to improve neuropsychiatric symptoms, especially in acute phases of neuropsychiatric deterioration. Nevertheless, CGs of patients with intermittent severe neuropsychiatric diagnoses often need immediate comprehensive (multidisciplinary) support.

Recent studies driven by the COVID-19 pandemic have shown that video consultations are beneficial for patients and CGs. For technical reasons, teleradiological consultations including video-visits may be challenging for elderly CG. However, the acceptance of video-visits was found to be high [33]. Strainful transfers to medical services can be minimized and patients and CGs can communicate with their doctors, psychologist, physiotherapist, nurse, or social worker in their usual familiar environment. Video-visit-based home rehabilitation programs have been developed. Video-visits may be less favorable for patients with severe impairments or symptom fluctuations than for patients with stable disease [33]. In summary, video consultations save time and seem altogether helpful to attenuate CB.

In late-stage neurological disease, falls, fluctuations of motor functions, complex therapies, repeated injuries, pain, fatigue, nausea, respiratory distress, incontinence, nocturnal sleep impairment, and concomitant diseases markedly deteriorate quality of life and exacerbate CB [14, 30‐32, 34].

CB does not only depend on the patient, but also on CG-related factors such as age, sex, health status, quality of sleep, education, occupational obligations versus retirement, information about perspectives of the disease and medical, social, psychological, or legal consequences, personal competences, and supportive measures of the public health systems or private care institutions. Family background, relationship between the CG and the client, space in the patient’s home, socioeconomic parameters, and resilience of the CG [7, 31, 32, 34‐37] are further important factors of CB. In most diseases CB increases with disease duration and progression, and with the duration of care. However, CB may stabilize with duration of care following adequate comprehensive support measures and in end stages of dementing illnesses. Knowledge about the individual needs of the patient and the CG as well as personal, psychological, and medical support may help the CG to cope with daily challenges of caregiving and improve the CG’s quality of life.

In most studies analyzing CB in neurological diseases, inventories such as the Zarit CG Burden Interview (ZCBI), the CG Strain Index (CSI), the Burden Scale of Family CGs (BSFC), and patient- or CG-related quality of life interviews are used [38‐41]. Objective measures of CB are less frequently applied, such as scales assessing informal care time [42]. Most of these inventories address specific questions about aspects and consequences of care and factors underlying CB, resulting in sum scores reflecting severity classes of CB (mild, moderate, severe CB) [38]. In some of the inventories, such as the ZCBI and the CSI, cut-off scores indicate thresholds to severe CB and a high risk of mental health problems for the CG [38, 39, 42]. CGs of neurological patients often report limitations in personal needs, privacy, self-determination (especially if patient and CG live together), strain with regard to occupation, family and social life, negative expectations and concern about the patient’s future, exhaustion, sleep impairment, and somatic and mental health problems. Moreover, financial distress, information deficits, a feeling of guilt and incompetence in providing appropriate care, of being left alone with the client, and negative emotions (irritation, anger) are reported [7, 26, 42]. Absence of support by other persons, low levels of education and income, living together with the patient, lack of leisure and recreation, and impaired health of the CG (psychiatric and somatic diagnoses) are determinants of CG-related CB. Caregiving children may be more burdened than partners because of unmet needs of caregiving, occupation, and family, conflicts of interests, and loss of contacts with friends [7]. CGs often give up their job or reduce working time, resulting in a loss of income.

In stroke patients, patients suffering from a traumatic injury to the nervous system, and brain tumor patients, CB depends on the severity of functional decline including neuropsychiatric and behavioral deficits and the coherence of caregiving persons. CB is mostly severe in advanced stages of motor neuron disease and brain tumor disease, similar or somewhat milder in atypical parkinsonian syndromes [14, 24‐26, 32]. Parkinson’s disease is associated with substantial CB in advanced but not in early disease stages, early Alzheimer’s disease with mild to moderate CB [7, 14, 25, 26] in the first years of the disease. Nevertheless, a substantial proportion of CGs of Alzheimer patients have a high risk of mental health problems, such as depression and burnout [7].

In multiple sclerosis patients, motor, vegetative (incontinence), and neuropsychological deficits, dependence, and need for care determine the severity of CB depending on the degree of functional deficits [42]. In stroke patients, CB depends on motor and sensory impairment, mobility, ADL, anxiety, and depression [43, 44].

Studies have shown that support from other family members or formal (professional) CGs are prerequisites for a CG to take a break, to have time for personal needs such as leisure, recreation, sports, social contacts, occupation, and family. Networks of dementia-specific care institutions are very helpful in supporting caregiving family members (such as www.​alzheimer-hilfe.​at). Holidays for pairs (partners of dementia patients together with the demented client, supported by professional CGs) are highly appreciated. CGs feel significantly better when caregiving is appreciated by the client, the family, and also the public [45]. CB is lower in families with close ties between family members, personal support, respect, and understanding of the CG’s needs. In pauses from care for personal needs or obligations, family CGs need confidence that their loved one is competently cared for by other persons [46]. A health psychologist should be contacted if CGs suffer from emotional distress. Financial support is an important issue, in particular for persons with low income, for compensation of financial strain, and personal support. Exchange of personal experiences between CGs in self-help organizations and specific information may also attenuate CB.

In our country (Austria), public allowances for caregiving (Pflegegeld) are mainly based on the average time needed for care per week (www.​oesterreich.​gv.​at). In demented persons, care is considered more demanding than in clients with other diagnoses, so that the allowance rates for dementia care are higher than in other diagnoses. Nevertheless, important factors contributing to subjective and objective CB and strain, such as behavioral abnormalities, severity, and nature of dependence as well as CG-related factors and the burden for the families are not specifically reflected in the funding procedures. A more comprehensive assessment of objective and subjective CB is required in time, to take adequate support measures, to maintain high-quality care, and to prevent the CG from severe CB and health problems.

Caregiving for senior residents in our country (Austria) relies on informal family members and on mostly foreign, mainly female, professional CGs. Around 60,000 foreign professional CGs work in Austrian households (www.​ooe.​arbeiterkammer.​at; www.​derstandard.​at, www.​ams.​at). Both informal and formal CGs and patients, as reported in detail for dementia patients, were struck by the COVID-19 pandemic [47]. Travel restrictions resulted in deficits of professional CGs for Austrian patients. Instead, family members often take over care functions. Many of them also had to cope with homeschooling and homeoffice. For those persons, caregiving became extremely challenging. Extra nursing leave was legalized. Foreign CGs who could not return to their families remained in Austria for longer periods of time than primarily intended. To compensate for this extra work, public allowances were provided by the government. CB also increased because of hygiene measures, such as the mouth/nose mask, which is problematic for patients who forget the meaning of this measure and persons with senile hearing impairment, communication deficits, or respiratory illness. Physical and social distancing including family members in nursing homes has caused major psychological distress in patients and therefore also in CGs (www.​tnp.​sg/​lifestyle/​health/​managing-caregiver-stress-during-covid-19). Before vaccination became available, CGs involved in the care for COVID-19-infected persons were at a high risk of becoming infected. In summary, the COVID-19 pandemic is a major general stressor for CGs working at home and in nursing homes in general, and also for neurological patients.