لخّصلي

Dementia represents one of the most significant public health challenges. Worldwide, approximately 50 million people live with dementia.1,2 A diagnosis as early as possible is essential to initiate evidence-based treatment and care and to better cope with the disease. The progressive nature of the disease leads to declining self-responsibility levels, self-determination, and autonomy, which are associated with an increasing need for care. Decisional capacity steadily decreases, but persons with dementia (PwD) wish to be acknowledged in all disease stages and aspects of care, make individual decisions, and be involved in decisions about treatment and care, daily living, and support.3–7

Dementia care should promote patient autonomy and be person-centered and, thus, be preference-based, respecting the patient’s values and the need to improve the patient’s sense of self-efficiency.8,9 It is also important to offer patients a purpose in life, open up perspectives for them, support them, and transfer responsibility to them.10 Furthermore, informal caregivers need to be considered.11 In the progression of the diseases, many PwD experience emotional changes and difficulties with how to express and manage their feelings, which can lead to more intense emotional reactions, which can be a great challenge for caregivers.12 Additionally, it can be a challenge to meet the expectations of PwD when the share of responsibilities changes between the person with dementia and his or her caregiver.13

It is often assumed that informal caregivers know the preferences of PwD best. However, some studies found that more than one-third of caregivers could not predict PwD preferences correctly.14 Most caregivers try to compensate for the decreasing abilities to support the patient’s well-being but might sometimes project their own preferences instead of putting themselves into the position of the PwD.14,15 Furthermore, caregivers’ preference prediction for PwD can subconsciously be influenced by how the caregivers’ own life is affected by certain decisions.7 Such preference divergences have also been elicited between nursing care staff and patients. Dementia patients in long-term care appreciate autonomy, whereas staff assumed safety and a homey ambience were the most important, demonstrating the existence of discrepancies between professionals and patients.16

Knowing preferences for PwD could inform recommendations for dementia care practices, increase adherence to treatment, therapies, and care, and improve and individualize interventions and patient-related outcomes, including health-related quality of life (QoL).17–19 A systematic review that summarizes the existing qualitative and quantitative evidence about PwD preferences is currently lacking. Therefore, this systematic review aimed to summarize the preferences of PwD, including all relevant domains of treatment, care, support, and everyday life.