There are many research papers released each year, each sharing insights on specific aspects of what can be narrow topics. Much like a jigsaw puzzle, each research paper’s findings are like a single piece that need to be added to the whole to create a picture or understanding of the topic. To add to the complexity, they are written in the at times, hard-to-understand language of academics. Unless you are familiar with the terms used (sometimes, even how the terms are defined within the author’s profession), it can be difficult to figure out what the author is trying to say. But there are two reports I would like to share that are written in easy-to-understand language and meant for the public. Based on research and vetted by experts in the field, both reports share the current information known about caregiving.
Alzheimer's disease Facts & Figures
The first report is the Alzheimer’s Association Facts & Figures. Released yearly, the newest 2022 edition is now available. Dementia focused, Facts & Figures 2022 shares the current understanding on a broad range of topics, not only on Alzheimer’s Disease but it also offers basic information on other dementias as well. What makes this report so valuable is not only does it provide the statistics, but it also provides background and context to help understand the statistics.
Every year they examine the prevalence (how many people have the disease right now), mortality and morbidity (death facts – how long till death, cost to state, public health impacts, etc.), caregiving (who they are, burden, effects on health, etc.), the dementia care workforce (diagnosis, treatments, training, etc.), and the use and costs of health care, long-term care and hospice. Each edition also offers a special topic – this year’s edition takes a close look at mild cognitive impairment or MCI. Everything is referenced and citations are provided in case you would like to follow up and read the source material.
Caregiving in the U.S. 2020
The second report is a partnership between two of the most respected organizations in the caregiving world – the National Alliance for Caregiving and AARP. Called Caregiving in the U.S., this report thoroughly examines the question of exactly who the caregivers in the United States are and examines their experience as care providers. The original study was done in 1997 and it is updated every five years and a new report is published.
Not only does it look at caregivers as a whole, but it also breaks out brief profiles of typical caregivers by population. You can find the full report, executive summary, topic reports about caregiving and working, caregivers 18-49, caregivers 50+, infographics, multiple profiles, the full survey questionnaire, and the methodology at the link above (click on report title). This report is incredibly helpful not only for agencies seeking funding or developing programs who want to know who to reach out to but also for the caregiver who wishes to place their own experience within the greater context of the experience of other caregivers.
While there are other policy and research reports out there, I have found these two to be valuable as OAC continues to develop and research caregiving interventions and train professionals in these interventions
