Caregivers & capacity evaluation
Caregiver burden: A clinical review. Adelman, R.D., Tmanova, L.L., Delgado, D., Dion, S. &
Lachs, M.S. (2014)
Caregiver burden
The overlapping domains of physical, mental, and psychosocial health can affect caregivers of older
patients. These domains are manifested by late-life depression, geriatric suicide, social isolation, and
caregiver burden. Caregiver burden can be the most compelling problem affecting caregivers. The
clinical goal is to prevent/detect caregiver burden early, provide skilful caregiver assessment, and
offer appropriate intervention(s) to prevent or treat caregiver burden.
Definitions
Caregiver burden is often defined as “The extent to which caregivers perceive that caregiving has had
an adverse effect on their emotional, social, financial, physical, and spiritual functioning”. This
definition emphasises the multi-dimensional toll caregiving may exact on care providers and also that
caregiving is a highly individualised experience. However, different thresholds exist for triggering
care-giver burden. Although at times stressful, caregiving can also be emotionally rewarding.
The epidemiology of family caregiving and caregiver burden
Caregiver burden prevalence has increased. The majority of caregivers are women who take care of a
relative or a friend. Caregiving includes assistance with basic and instrumental activities of daily living
and medical support. Also important, the caregiver provides emotional support and comfort. Spousal
caregivers, as compared with an adult child assisting a parent, face greater challenges because they
are more likely to live with the care recipient, have little choice in taking on the caregiving role, are
less aware of the toll that caregiving is taking on them, and are more vulnerable because of their old
age and associated morbidities. Most family caregivers are untrained and often feel ill prepared to
take on caregiving tasks.
Risk factors for caregiver burden
Risk factors are female sex, low educational attainment, residing with the care recipient, depression,
social isolation, financial stress, higher number of hours spent caregiving, and lack of choice in being
a caregiver. Around-the-clock care obligations, particularly in situations that may be associated with
high or increasing care needs, and care transitions are all substantial risk factors and should trigger
referrals for caregiver assessment. Knowing the primary disease of the care recipient can facilitate
prediction of caregiving challenges.
Caregivers become “the invisible patient” and often have significant health and psychosocial needs
that, in turn, affect caregiving. This means that clinicians should also relate to family caregivers.
Diagnosis and assessment of family caregiver burden
Although assessment of physical, psychological, and social factors is the cornerstone of quality care
for older adults, acknowledgement and assessment of the health and well-being of the family
caregiver is not routine. Physicians should play a greater role in assessment of family caregivers. This
requires identification of factors that may be causing distress. The following approach is
recommended: (1) identify the primary and additional caregivers; (2) incorporate the needs and
preferences of both the care recipient and the caregiver in all care planning; (3) improve caregivers’
understanding of their role and teach them the skills necessary to carry out the tasks of caregiving;
and (4) recognise the need for longitudinal, periodic assessment of care outcomes for the care
recipient and family caregiver.
,Capacity Evaluations in Older Adults: Neuropsychological Perspectives. Morgan, J.E.,
Marcopulos, B.A. & Matusz, E.F. (2019)
Scientific research and technological advances have led to improvements in medicine and healthcare
delivery, resulting in greater numbers of the older adults living to advanced years. In this chapter, the
issues regarding the assessment of competency in older adults are discussed, which means, that
aspect of mental ability recognised in law as sufficient for the making of decisions, such as for giving
informed consent to one’s health care, the making of a will, and the management of one’s finances.
The legal perspective
Capacity refers to mental capacity, or mental ability, that is, competency. The concept may be
expressed by the question, “Does this person have the requisite mental abilities to perform this
specific task?”. From the legal vantage point, the presence of a mental disorder or disability does not
necessarily equate with or imply an inability to perform a given task, that is, incompetency. Though
necessary, the presence of a disorder or disease affecting cognition is insufficient by itself to form a
judgment of incompetency. One must demonstrate specific functional impairment on tasks necessary
to meet standards for that particular capacity as a consequence of the disorder. Civil competency,
similar to competency in criminal contexts, refers to a person’s functional ability to make a particular
kind of decision or to perform a particular kind of task. The context of the decision is critical to the
determination of competency, not merely the examinee’s mental status.
In matters involving criminal competency, questions arise concerning a defendant’s capacity/ability
to proceed to trial. Civil competency is similar conceptually, generally expressed by the question,
“Does the person have the competency, the mental capacity, to make a certain decision?”.
There is also the concept that people have the right to self-determination. Self-determination
extends to individuals with mental disorders as well, except when significant harm to others results
from their actions or if they are considered incompetent to make the particular decision in question.
Thus, the right to self-determination “is not absolute”. The precise meaning of competence may
differ and it depends on the specific question and the context.
Neuropsychological assessment should take into account not only the cognitive status of the
examinee but the nature of the capacity issue or question with which the examinee is expected to
comprehend and act on in a reasonable, rational, and informed manner. The presence of cognitive
impairment, psychiatric disorder, or mental status abnormality by itself is insufficient to declare
incompetence. In a similar vein, an individual may be considered competent for a particular task or
decision but not for another.
Guardianship is a legal determination where the state delegates authority over a person’s estate or
decisional capacity (for instance financial management) to another individual. Guardianship may be
specific to a particular issue or to something more general. Judgment has been described as “the
capacity to make sound decisions after careful consideration of the available information, possible
solutions, likely outcomes and contextual factors”. Beyond traditional psychometric assessment, the
examiner will need to probe the examinee’s understanding of the health-care issue(s) in question.
Testamentary capacity is an issue that most typically arises after the will has been prepared.
Executive functions are particularly important for testamentary competence.
Cognitive and behaviour change in older adults
Cognitive change is thought to be an inevitable part of aging, commonly affecting speed of cognitive
processing that affects memory and executive functions. These changes are referred to as “cognitive
aging” and are thought to be normal and expected. Researchers characterise the age-related changes
, in cognition as either “benign” or “malignant”. Benign cognitive change (cognitive aging) is
sometimes also referred to as “age-related cognitive decline” (ARCD) and is thought to be the
hallmark of generally healthy aging. Contrasted with ARCD, or normal aging, is abnormal or
malignant cognitive aging, where greater cognitive impairment is present. An “in-between” state has
also been identified characterised by the presence of a memory complaint, poor performance in at
least one measure of cognition, normal activities of daily living, normal global cognitive functions,
and abnormal memory functions. This state is also called MCI. Most typically, MCI is typified by
additional changes in attention, language, and visuospatial skills. Clinically, MCI patients manifest
memory impairment to a similar extent as patients with mild AD type, and both MCI and AD patients
commonly experience difficulties completing instrumental ADLs. The point of differentiation between
the two diagnoses lay in the patient’s ability to complete basic ADLs. Instrumental ADLs remain intact
in individuals with MCI, whereas people with AD experience difficulties completing these tasks.
Additional cognitive functions in patients with MCI remain relatively unimpaired, whereas cognitive
impairment in AD patients expands to areas beyond the cognitive domains most commonly
associated with MC.
