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Dementia and Alzheimer´s Disease in Portugal: from illness narratives to socio-economic costs Determination of Rage and S 100 expression levels on Parkinson s Disease
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Impact of dementia on informal care : a systematic review of family caregivers' perceptions
Publication . Lindeza, Patricia; Rodrigues, Mário; João, Costa; Guerreiro, Manuela; Rosa, Mário Miguel
Introduction: Caregivers play a major role in providing all the support and care in daily activities for their relatives with dementia. To fully describe the influence of dementia caregiving on family caregivers’ life, we conducted a systematic review including caregivers’ perceptions about the positive and negative aspects of caring and the expressed factors.
Materials and methods: We conducted a systematic review including articles from January 1998 to July 2020. Qualitative studies reporting family caregivers’ perceptions about their experiences and the effects/impact of dementia caregiving were eligible. Two authors extracted the data independently, and the analysis focused on the positive and negative aspects of dementia caregiving in caregivers’ life.
Results: Eighty-one studies with 3347 participants were included in this review. The positive aspects of caregiving in caregivers’ life encompass personal accomplishment and strengthening relationships, which were enhanced by good medical counselling/formal care support and family/friends support. The negative aspects included emotional and social aspects experienced by caregivers. Other factors such as inappropriate medical/formal care support, illness progression and the costs of dementia contributed to negative appraisal.
Discussion and implications: The findings provide insights into the holistic experience of caring for a person with dementia revelling the major positive and negative aspects underlying the caregiver role. The evidence emphasises the need ‘to focus on positive aspects’ and targeted interventions aimed at reducing the negative impact of caregiving, which has serious consequences on caregivers’ quality of life. A multicomplex intervention for dementia informal caregiving should be developed, committing the society to promote mental health, address these community needs and improve the quality of life of the person with dementia and their family caregivers.
Dementia and Alzheimer’s disease in Portugal : from illness progression to economic costs
Publication . Lindeza, Patricia; Rosa, Mário Miguel; Guerreiro, Maria Manuela; Pereira, Sónia
Ageing of population is a worldwide reality and Portugal is one of the most ageing -leading countries. The prevalence of dementia increases with age, almost doubling every five years when over 60 years old. With the increase in human longevity, the global number of people with dementia is expected to grow significantly upon incoming years. Following increasing demographic ageing, the prevalence of dementia is particularly worrying in Portugal.
Dementia prevalence has undergone a vast increase in recent years, and it has become one of the greatest healthcare challenges of the 21st century due to the high demand for medical, social, and institutional care. Dementia is a clinical syndrome characterised by a cluster of symptoms manifested by impairment in higher brain functions such as memory, language and cognitive functions, changes in behaviours, entailing difficulties in activities of daily living (ADL). As a result, there is an increasing demand for informal care that play an important role for people with dementia (PwD), helping them in their daily activities, whose dependence increases as disease progresses.
The task of caregiving is complex and can lead to physical, mental, and financial stress for caregivers. Emotions such as guilt, resentment, sadness, and anticipated loss of the cared one can emerge. Therefore, informal caregivers significantly endure levels of psychological morbidity, depression, stress and burden. It is widely reported that dementia informal care affects the health, well-being and quality of life (QoL) of caregivers. Therefore, the burden experienced by caregivers might result in low capacity or mood to care for their relatives with dementia, affecting patient’s well-being as well.
The studies of this thesis aimed to help characterize the daily impact of dementia in a Portuguese sample of PwD and their informal caregivers at the individual, familiar and social level. To measure the QoL and dependency level of the patients, while describing their living context and formal care services utilization. To describe, as disease progresses, how it is like to care for a PwD in a familial context and the costs involving dementia were also objectives of the work, as well as, to measure the QoL and physical, emotional and social burden of the informal caregivers and describe the main factors involved. This thesis is a synergy of qualitative and quantitative methods. The mixed use of these methodologies empowered caregivers, allowing a voice to better describe how is caring for a PwD and its impact on QoL. The quantitative part of this study allows data characterization of patient’s QoL, cognitive and functional ability and, informal caregivers QoL and physical, emotional and social burden, together with study of the influence of sociodemographic variables of the dyads that influenced PwD QoL, informal caregivers QoL and overall burden.
The work in this dissertation showed that our sample of Portuguese PwD were referred by their caregivers as having extreme low levels of QoL and high impairment on their functional and cognitive ability. Of note, dementia informal care included a wide range of experiences referred by the caregivers, as well as drastic changes introduced in their personal lives. Altogether, informal care resulted in high burden and low levels of QoL for the informal caregiver. Factors such as the PwD educational level, the changes in everyday life and habits were identified as potential explanatory factors of PwD HRQoL. Different explanatory factors were identified for caregivers QoL and burden, however, in both cases the familiar relationship with the PwD and PwD pain/discomfort were identified.
Planning to decrease the burden of dementia informal care and the impact on caregivers and patient’s well-being, will likely mean that the articulation and cooperation of different public services (formal care services, neurology, psychiatric, psychology, social and financial support) should be re-thought. In the future, more studies are needed to further characterize the hurdles and needs of dementia care to further develop multicomplex interventions aimed to reduce the negative effects of dementia on patient’s QoL, while promoting caregiver’s QoL and decrease the overall burden.
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Fundação para a Ciência e a Tecnologia
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PDE/BDE/120498/2016