Alcohol and drug use disorders have devastating physical, mental, and socio-economic
consequences not only for patients but also for their families. It is a critical public
health concern for which the global burden far exceeds the difficulties experienced
by many of the 250 million drug users1, or the two billion alcoholic drinkers2 worldwide.
Their illness substantially affects the quality of life of other family members, including
financial security, mental health, social networks, and productivity. The cost approaches
2 per cent of the gross domestic product of some index countries3.
Family involvement with the disease of addiction was self-evident to social workers
who, in the early 20th century, did their work in clients’ homes and could see directly
how families function4, but has only recently received proper scientific attention.
Psychiatric research on caregiving has increasingly recognized the price paid by families
of individuals with mental health problems and their contribution to the care process5.
However, the analysis has traditionally been limited to relatives of individuals with
mental disorders like schizophrenia, bipolar disease, or dementia, and investigations
on drug and alcohol use have been slowly following the path. The delay is perhaps
due to a difficult progression from focusing on the role of the family in generating
or exacerbating the drug user's problems, through identifying family members as recipients
of care, to learning what they can offer to the management of addiction. Still today,
primary challenges remain the broadening of the substance abuse treatment attention
from the individual to the family and its active participation in the recovery process.
In this issue, Mattoo and colleagues6 report on the burden endured by caregivers of
men with alcohol and opioid dependence in India. Their results confirm the existence
of high rates of subjective and objective burden, if compared across cultural boundaries
and socio-economic conditions, or with different psychiatric diseases5. In particular,
the finding that living in a rural environment, together with earning a lower income,
was associated with greater family burden offers important elements of reflection.
As the level of education of caregivers or patients did not play a significant role
in the perceived burden, we may assume that access to treatment and social support
are important components to enable coping with the burden of a chronic disease. Indeed,
beyond the initial evidence of how having a family member with an alcohol or drug
problem affects family functioning and leads to increased risk of developing patterns
of physical and behavioural problems, we observe a reduction of medical cost and utilization
by the family when that individual receives treatment for his problems3. In addition,
international families of patients with chronic psycho-behavioural conditions seem
to give increasing significance to the personal and political benefits of organizing
not only to learn and understand how to cope with the problem but also to help foster
a social response. It has been demonstrated that in the daily routine of living with
substance dependence and other chronic psychiatric illnesses, lack of perceived social
support by family caregivers is an important predictor of subjective caregiver burden
if external support from the family is lacking, and of objective burden if other family
members are of little help8.
It is important to keep in mind the complex role that families play in substance dependence.
The assistance they provide is multifaceted, including direct care, financial assistance,
and management of illness symptoms, as well as helping directly their relatives’ engagement
and retention in treatment. As they can be a source of help to the treatment process,
they also must manage the consequences of the addictive behaviour. Family members
are concerned about the substance abuse behaviour of the individual, but they also
have their own problems. At times, complementary or mirroring problems may crystalize
the relationship into a codependent dimension, where the ‘non-ill’ member becomes
overly concerned with the difficulties of the other, and renounces to his/her own
wants and needs. Of course, this concept can lead to the risk of pathologizing otherwise
normal caring functions, particularly those that have to do with empathy and self-sacrifice.
In a potentially highly unstable ‘role play’, members often must change their conventional
family roles or add new, often-inappropriate functions in order to adapt to the unpredictable,
unreliable and sometimes demanding behaviour of the substance abuser. The individual
typically engages with searching or using substances most of the time and is often
incapacitated by the effects of alcohol or drugs, which leaves him/her unable to fulfill
any responsibility in the family. Vacant roles may be redistributed and some family
members, especially children, might have to bear excessive responsibilities. To further
complicate the picture, caregivers or other burdened members of the family often do
not know how to ask for help, or refuse to do so because of shame and fear of social
stigma9. The effects of the burden often extend beyond the nuclear family. Extended
family members may share feelings of concern, fear, anger, embarrassment, or guilt;
they may wish to ignore or defend from the individual abusing substances. Furthermore,
the effects on families may continue through generations. Trans-generational effects
of substance abuse may have a negative impact on role modelling and concepts of normative
behaviour, which damages the relationships between generations and continues to influence
family functioning well beyond the life of the ‘sick’ member10, especially among those
cultures where the extended family is an important reference point. Thus, providing
services to the whole family can improve treatment effectiveness and contribute to
social prevention and cost containment, as in families with alcohol or substance abuse
single members often are connected not just to each other but also to any of a number
of public agencies, such as social services, criminal justice, or child protective
services.
Although issues of caregiver burden are receiving increased attention, there is still
a strong need for studies on the burden of alcohol and drug use, in particular investigations
based on large sample sizes and control groups. Given the fact that primary caregivers
represent a diverse group of relationships, future research should also determine
if there are differences related to specific types of relationships and roles in the
family. More epidemiological and longitudinal studies and studies from different cultures
are needed to gain a better understanding of generic and specific factors that influence
the relationship between family and mental health. Significant challenges concern
both the study of caregiving, and clinical practice and health policy. In research,
further study on caregivers’ ways of coping should identify effective strategies and
focus on resources more than deficits. The estimate of financial burden will face
the complexity of calculating immaterial costs and assessing the impact of service
structures on burden. Quality of findings could be enhanced by further improving conceptual
clarity and by the agreement on a few standard instruments for the measurement of
caregiver burden to facilitate comparison. On the practical level, strategies to improve
communication between families and health providers can be better developed if primary
care physicians receive adequate training to operate a much needed function of substance
abuse screening and routine management11. Finally, an active involvement of families
in the therapeutic process and the correct response to their needs can only be fully
achieved with a transition from an acute model of brief treatment of alcohol and drug
use problems, to a more comprehensive chronic care model, assigning equal importance
to family members and the individual in both treatment and continuing care phases.