The World Alzheimer Report 2022 from Alzheimer’s Disease International (ADI) is dedicated to the vast topic of post-diagnosis support – an umbrella term encompassing the variety of official and informal services and information aimed at promoting the health, social, and psychological wellbeing of people with dementia and their carers after a diagnosis.
The recommendations in this extensive report include:
National dementia plans need to become a policy priority
Governments must urgently build robust models of post-diagnosis support that are tested, funded, monitored, and fine-tuned. Linking them to key action areas of WHO’s Global action plan on dementia provides a framework for design – focusing on treatment, care, support, education, risk reduction and innovation. Government involvement in building these systems will ensure that improvements to post-diagnosis support models will be easier to implement.
Person-centered care must become the norm
People with dementia should have access to personalized care plans that enable them, along with their carers, to make informed choices, plan for the future, and participate in shared decision-making about the care they receive.
Care should be culturally appropriate and gender inclusive
Cognitive interventions should be developed in ways that are tailored to individual needs and circumstances – taking into consideration cultural, gender, sexual, ethnic, racial and health factors, life interests, and the wishes of care partners.
Support for carers must be prioritized
Governments must support health and longterm care systems to provide carers, many of whom are women, with the information, education, services, resources, and support they need to continue their caregiving role. This includes access to respite and employment protection for those combining work and caring roles. Caring is an important, if often undervalued, role that comes with high levels of stress and anxiety, and much more needs to be done to make sure that carers are able to carry their duties without sacrificing their financial, social, and mental wellbeing.
Care needs to be coordinated and accessible
Healthcare systems should develop a case management approach, in which an appropriately trained professional (key worker/navigator/ nurse) can liaise and connect with multidisciplinary teams to help people living with dementia
and their carers navigate the often-complex post-diagnosis care pathway at each stage of the dementia journey. Evidence shows this has promise in terms of better outcomes and healthcare costs.
We must continue to challenge stigma and raise awareness – it remains a severe barrier
National awareness campaigns must tackle stigma and lack of education on dementia, as this continues to be a barrier to accessing diagnosis and post-diagnosis support. Many countries still report a general lack of knowledge, awareness, and understanding among healthcare professionals, and governments must act to alleviate this.
Education must be improved and expanded
On a global level, there is an urgent need to improve and expand dementia education, training, and professional development for clinicians and other health and long-term care professionals in post-diagnostic management and support from both pharmacological and non-pharmacological standpoints. Life-long learning, starting early in schools, extended through to specialist courses in universities and medical schools, and continuing throughout health professionals’ careers, can break stigma and encourage deeper understanding and expertise.
Further trials of cost-effective and evidenced-based psychosocial interventions are needed
Nonpharmacological interventions, such as Cognitive Stimulation Therapy (CST) and Cognitive Rehabilitation, should be further researched and implemented as possible cost-effective and impactful interventions globally.
Risk reduction must be bolstered
Governments are urged to promote population-based approaches, combined with education about individual dementia risk factors, to encourage public engagement in behavioral and lifestyle changes to reduce the risk of dementia. Risk reduction and rehabilitation are life-long strategies that include post-diagnosis stages.
More data and findings can be found in the full report here.