Dr Lynn Woods, Professor in the Department of Doctoral Programs, School of Nursing, Azusa Pacific University, describes Latinx with dementia and in this respect, why culture matters
While it is well established that the prevalence of dementia for Hispanic older adults is 1.5 times that of Non-Hispanic Whites, little attention has been paid to cultural considerations in the measures used for assessment and decision making for treatment choices. The Latinx culture is a heterogeneous culture, including components of ancestral Indigenous and African traditions, mores, beliefs, and cultural values combined with European practices. These cultural values are based on collective experiences that influence thoughts, goals, communication and behaviours. Cultural sensitivity and congruency are critical to consider for the Latinx population with dementia and their families.
Why culture matters for Latinx with dementia
Culture largely defines how Latinx persons with dementia and their families make meaning of their conditions, respond to symptoms, and make decisions about their treatment. After all, while the patient’s mind might forget, their heart may still remember images, odours, and sounds that are either threatening or comforting.
Familismo/familism, simpatia, and respeto continue to be the traditional Latinx cultural values among ageing Latinx. The concept of familismo involves broad networks of support that extend beyond the nuclear family to include aunts, uncles, grandparents, godparents, and other close family members. In other words, dementia is a family affair. Affiliation, obligation and cooperation are emphasised in the Latinx culture. Within Latinx families, individual identity is commonly secondary to family identity, requiring individuals to prioritise family needs over individual ones. Such family-centred socialisation creates a strong sense of connectedness and interdependence within its members that can potentially buffer life stresses. Familismo also promotes and maintains loyalty, attachment, and a sense of responsibility toward the members of one’s family.
Given the strong sense of obligation, loyalty, and responsibility that familism engenders, Latinxs are more likely to be cared for by family members when faced with chronic and terminal conditions. However, research on familism and caregiving has produced mixed results. For instance, some studies demonstrate that familism conveys a perceived availability of support and caregiving satisfaction while assisting those with dementia, while others indicate increased stress related to obligation.
While the concept of familismo is dominant, sympatia, maintaining harmony and avoiding unpleasantness in interpersonal relationships is also a closely held cultural value in addition to respeto. Respeto refers to acts of respect, or how one demonstrates respect to parents, grandparents, or individuals in positions of authority based on age, sex and interpersonal/ social positions of authority. Respeto can be transferred to individuals out of the family, including health providers who are to be acknowledged and treated with respect for their knowledge and authority. Included in these cultural concepts are personal relationship/personalismo, trust/confianza, spirit/espiritu and presence/ presentismo, which all affect assessment and treatment decision making.
As seen in all persons with dementia, behavioural symptoms of dementia (BSD) are very common, with agitation and anxiety occurring in about 50% of those with dementia. In fact, all those with dementia will eventually experience BSD including Latinx with dementia. This presents a challenge for caregivers. These challenges include education about BSD, accessing information about dementia, and the use of resources to name a few. For Latinx caregivers, familismo may be a double-edged sword. On the one hand, familismo can be a determining factor in becoming a caregiver accompanied with challenges and stressors, while on the other hand, familismo can increase the sense of support and loyalty.
Studies indicate that Latinx tend to underutilise formal service that could be supportive to them. A complex set of factors contribute to the underutilisation of mental health services by Latinxs including:
- Access to health insurance.
- Language barriers.
- Lack of culturally congruent services.
- Racial/ethnic biases among healthcare providers.
Fotonovelas, culturally congruent stories conveyed through photographs and text, have been used successfully to increase awareness about BSDs, symptom management, and to teach Latinx caregivers how to understand and manage stress and depression. Education and accurate assessment are critical.
Assessment of Latinx with dementia
Receiving an accurate diagnosis is essential to planning care and treatment as is the inclusion of cultural values when completing these assessments. Several factors influence the outcomes when measurement tools are used for the assessment of Latinx with dementia. Among those are the health literacy of the persons being assessed and their family members, language barriers and culturally congruent measurement tools. Healthcare providers must be sure to use measures that have undergone careful translation, that are validated and include cultural values in the interpretation of the measures. Performance-based measures evaluate an individual’s ability to engage in everyday life. Culture shapes norms, values and behaviour patterns that guide one’s everyday life. Time of day must also be considered when assessing strengths and abilities. For those with dementia, an assessment later in the day when the brain is tired coupled with issues of language and decreased cultural congruency will likely limit optimal performance and lead to less than accurate conclusions.
Culture influences decision making about treatment options. Healthcare providers must be aware of the cultural values of Familismo/familism, simpatia, and respeto as they walk beside the Latinx family navigating the journey of dementia. This awareness can make the difference between a successful, albeit challenging journey, and a much less successful outcome for all concerned. One major focus must be that dementia for Latinx families is definitely a family affair. Healthcare providers must be aware that all decisions and treatment options are made within this context.
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