Psychosocial Adjustment of In-Home Caregivers of Family Members with Dementia and Parkinson’s Disease: A Comparative Study

Abstract

Neurodegenerative diseases such as Parkinson’s and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers’ psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson’s disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson’s disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson’s or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.

Understanding support systems for Parkinson's disease management in community settings: A cross‐national qualitative study

“…This important change in PD management, from the care delivered mainly in hospitals towards care in the community and in the patients' home, is needed in many countries to achieve a patient‐centred perspective and to address health and nonhealth needs 28,35 . It is in the community context that PwPD face multiple motor and nonmotor symptoms including cognitive decline 6 and where PwPD and their family carers face the adjustment process to their new personal, familiar, social and professional roles 5,36 . Hence, it is important that all health and social care professionals involved in PD management acquire specialist training in PD and an in‐depth knowledge of the role of the different disciplines involved 28 .…”

“…28,35 It is in the community context that PwPD face multiple motor and nonmotor symptoms including cognitive decline 6 and where PwPD and their family carers face the adjustment process to their new personal, familiar, social and professional roles. 5,36 Hence, it is important that all health and social care professionals involved in PD management acquire specialist training in PD and an in-depth knowledge of the role of the different disciplines involved. 28 The training delivered to multidisciplinary teams in the Dutch ParkinsonNet to increase specialization in PD is an example that has shown improvements in patient outcomes and care costs.…”

“…3 In addition, cognitive deterioration in the person with PD (PwPD) may involve a financial burden for the PwPD, the family carer and the health and social care system. [4][5][6] Thus, support is needed from a long-term perspective and often increases with the progression of the illness.…”

“…The consequences of PD on an individual level may result in the need for continuous support to manage multiple aspects of everyday life, including mobility, work, medication, safety, social life and emotional stability 3 . In addition, cognitive deterioration in the person with PD (PwPD) may involve a financial burden for the PwPD, the family carer and the health and social care system 4–6 . Thus, support is needed from a long‐term perspective and often increases with the progression of the illness.…”

El impacto del entorno residencial en la adaptación psicosocial y calidad de vida de personas cuidadoras de familiares con demencia

“…En un trabajo previo que comparaba el proceso de adaptación a la enfermedad de quienes cuidan a familiares con Parkinson y Demencia en su domicilio (Lopes et al, 2020) se concluyó que las variables más infl uyentes eran la propia enfermedad, el lugar de residencia, la situación laboral y el salario/ingresos. De ellas, la enfermedad (Parkinson y demencia) y el lugar de residencia eran las que mayor signifi cación tenían sobre la adaptación psicosocial a la enfermedad de familiares cuidadores.…”