World Alzheimer´s Day: The spotlight is on post-diagnostic support

Nereide Curreri, MSc, PhD

September 21st is World Alzheimer’s day. In 1994 on September 21st the association Alzheimer’s Disease International (ADI) celebrated their 10th anniversary by inaugurating the first World Alzheimer’s day. The day brings awareness: a spotlight on dementia, on the people living with dementia, and an opportunity for the people and organizations across the world working in the dementia field to be recognized.

It is estimated that about 55 million people worldwide have dementia (WHO 2021).  Alzheimer’s disease is the most common cause of dementia. Dementia is an umbrella term for a set of symptoms caused by a decrease in at least two areas of cognitive functioning that impedes independent daily living.  Dementia is a chronic and progressive syndrome, has no direct treatment or cure, and is often accompanied by comorbidities. In recent years, the focus in dementia care has been diagnosis: the earlier a diagnosis is made, the more support strategies (pharmacological and non) can be put in place, the higher the quality of life.

Every year, the theme for World Alzheimer´s Day (and month) is different. I am thrilled that this year´s special focus is one of dire importance:  post-diagnostic support. Across nations, diagnosis has been and still is a prime objective, and national dementia diagnosis rates are measured for example by the WHO global dementia observatory.

Care and support have remained consequential background issues to diagnosis, considered primarily family responsibilities, recalling a widespread familism culture (Curreri et al., 2022).  Recently, care for chronic health conditions and disabilities is moving to the forefront in ageing discourses (Bamford et al., 2021).  Long term care is one of the four main themes of the United Nations Decade of Healthy Ageing (2021-2030) (WHO, 2020) impelling governments to develop good quality long term care. The key message is that long term care must be an integrated, person-centred continuum of health and social support.

Through a person-centred, integrated lens, post-diagnostic support for people living with dementia can be organized across three vertical ecosystems.  With the person living with dementia at the center of a network, the micro ecosystem is made up of the family, friends, and the multidisciplinary health and social care professionals that provide direct support, and is ideally coordinated by a dementia specialist.  A health and social care organization such as a multisectoral clinic is the meso ecosystem which has also been coined ´a one stop shop´, where a person living with dementia accesses many specialists and labs, and where data sharing, collaboration and coordination lead to timely treatment and maintenance with shared goals. At the system level, the integration across many organizations that provide services for older adults and people living with dementia offers families a solid collaborative referral network across a territory.

Post-diagnostic support for people living with dementia, when available, is fragmented and complex, and life without support becomes a vague existence (Svanström & Sundler, 2015).  Fragmentation in care systems is most obvious to people with co-morbidities, who must juggle a myriad of care professionals and treatments that are not linked to each other. A 2020 scoping review of gaps in dementia care in Europe (Martin et al.) found:  fragmented non-person-centred care pathways; health staff´s limited knowledge and skills in dementia care; poor interagency communication and information sharing; and dissonance in healthcare policies between national and local objectives. Addressing these gaps with the pillars of integrated care will sustain the building of a long term care continuum.

¨When you´ve met a person with dementia, you’ve only met one person with dementia¨.   Professor Tom Kitwood´s renowned phrase reveals the need for recognition of the individual.  Thus when exploring what constitutes post-diagnostic support for dementia, the first step is the application of a person-centred approach.  Next, the three principal actions of integrated person-centred dementia support are: to support a sense of self and personhood through relationship-based care and services; to provide individualized activities and meaningful engagement; and to offer guidance to those who provide care for people living with dementia (Levy-Storms, 2013).

Maintaining independence and participation in life and society are achievable goals for people with a dementia diagnosis, see Dementia Alliance International´s (DAI), association for and by only people with a dementia diagnosis, core beliefs.  Health and social care professionals are called upon to ensure these beliefs are realized for every person living with dementia.

The role of post-diagnostic support is to be flexible and empowering with information, resources, and referrals, from the time of diagnosis forward. Setting goals and advanced care planning are also essential supportive strategies. A UK qualitative study found five main themes for post-diagnostic dementia care: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support (Bamford et al., 2021).  Following the design of support services, responsibility of support service delivery and accountability must be assigned.  These are two critical components of an integrated person-centred care pathway.

Heeding ADI´s call, the time has finally come for a global shift in focus to building the foundations for integrated and person-centred post-diagnostic support for people living with dementia. One year of post-diagnostic support won’t cut it! Long term support is what we need.

References

BamfordC, WheatleyA, BrunskillG, BooiL, AllanL, BanerjeeS, et al. (2021) Key components of post-diagnostic support for people with dementia and their carers: A qualitative study. PLoSONE 16(12):e0260506

Curreri, N., McCabe, L., Aboderin, I., Robertson, J., Pot, A.M., & Keating, N. (decision in process) Family Beliefs of Care Responsibilities in CESW Africa and Latin America. International Journal of Care and Caring.

Levy-Storms, L. (2013). Dementia care: The quality chasm. Dementia Initiative. White paper

Martin A, O’Connor S, & Jackson C. (2020). A scoping review of gaps and priorities in dementia care in Europe. Dementia, Vol 7, 2135-2151. doi: 10.1177/1471301218816250.

Svanström, R., & Sundler, A. (2015). Gradually losing one’s foothold – A fragmented existence when living alone with dementia. Dementia. Vol 14, 145-163. 10.1177/1471301213494510.

World Health Organization (2021) Dementia. https://www.who.int/news-room/fact-sheets/detail/dementia

World Health Organisation (2020) UN Decade of Healthy Ageing: plan of action, https://www.who.int/initiatives/decade-of-healthy-ageing

Nereide A. Curreri 

Senior Associate

Researcher at the Optentia Research Unit of North-West University South Africa

Researcher at the Centre for Environment, Dementia and Ageing Research (CEDAR) of University of Stirling, UK