Investing in hope in dementia care practice: What do we need to consider?

Abstract

AbstractAlthough most countries have ratified the United Nations Convention on the Rights of Persons with Disabilities, only a quarter have a national dementia plan which outlines a strategy to support People Living with Dementia (PLWD) and their families. Majority of PLWD reside in low‐and‐middle‐income countries where the numbers are expected to increase disproportionately over the coming decades. Healthcare systems in these regions are already overburdened, and resources for dementia are often inaccessible or unaffordable for most of the population. Factors like low public awareness, misconceptions about early symptoms being a natural part of aging and societal stigma also contribute to delays in diagnosis and hesitancy in help seeking.However, a recent Alzheimer’s Disease International report highlights that challenges in dementia care are not limited to low resource settings, and up to an astounding 85% of PLWD worldwide may not receive post‐diagnostic support. Research using paradigms like patient public involvement have highlighted how PLWD and their families often feel devalued as dementia has ‘no‐cure,’ drawing attention to experiences which have made them feel unsupported during interactions with health systems. Globally, the majority of dementia care is actually provided at home and by family members until a stage where institutional care is possible in settings where these resources exist. This highlights the importance of interventions which can support at‐home care, particularly since home care has also been shown to be a more cost effective model when compared to institutional care. Along with building public awareness and making society more dementia inclusive, training of healthcare professionals is also required for more hopeful communication. Using the value of hope can extend support to PWLD and their families by encouraging meaningful engagement within the family context and encouraging PLWD to continue participating in socially enriching activities.Whilst endeavors to find a cure for dementia must continue, greater investment is required in interventions that instill realistic hope in PLWD and empower their families to provide care within the community. These interventions play a critical role in reducing the negative impact that social withdrawal and social isolation can have on the well‐being of PWLD and their families.