The impact of fear and misconceptions on dementia outcomes

The term dementia describes a large group of illnesses causing progressive decline, with Alzheimer’s being the most common form.^1,2 Dementia is considered to be among the most disabling and burdensome health conditions.³ It is also one of the most common – over 24 million people are thought to have dementia worldwide, and the prevalence is expected to double every 20 years.³ Currently there is a lack of disease modifying treatment, and therefore early screening and management of lifestyle risk factors is recommended, yet psychosocial barriers such as fear and stigma keep many people from taking these precautionary measures.

What are the risk factors for dementia?

Most types of dementia are due to environmental factors as opposed to genetics. Potentially modifiable risk factors for dementia may include dietary patterns such as eating a Western-type, meat-based diet, sleep dysfunction (e.g. sleep deprivation, poor sleep quality) and a lack of cardiovascular fitness.⁴ Recent research also suggests that hearing loss, depression and social isolation may increase the risk of dementia.²

Can we help protect ourselves against dementia?

Early screening and taking preventative measures such as stopping smoking, eating a balanced diet and regular exercise are recommended.²

Although inconclusive, there is emerging evidence that lifestyle interventions reduce the risk of cognitive impairment, dementia, and Alzheimer’s disease.⁴ These include dietary practices such as following either a Mediterranean diet (including a high intake of fruit and vegetables, legumes, fruits and cereals, unsaturated fatty acids in olive oil, moderate intake of fish and low intake of meats and poultry) or a MIND diet which includes plant-based foods, green leafy vegetables and berries, and limits saturated fats.⁴ There is also growing literature to suggest that regular physical activity (e.g. aerobic exercise, balance training, resistance training) may reduce dementia risk.^{5, 6}

What are the potential benefits of screening/early diagnosis?

When combined with access to appropriate information and support, early detection and diagnosis of dementia can improve quality of life for people with dementia and help them and their families cope with the illness. Studies have shown that early diagnosis of dementia can help people live independently for longer, provide practical benefits such as being able to plan and prepare for the future, and enable people with dementia and their carers to have certainty and gain acceptance. However, most people don’t seek care until they are already symptomatic. By the time functional decline is detected there is already advanced brain pathology.⁷

40% of adults in the UK say dementia is the condition they fear most about getting in the future.¹

What stops people from having a dementia screen?

Barriers to screening include fear, stigma and misconceptions about dementia.^8,9 Even when people understand the benefits of early detection, many refuse screening and diagnostic testing. A US national poll of 1019 adults 50-64 years old, 48.5% reported they believed they were at least somewhat likely to develop dementia, yet only 5.2% reported to have spoken to their physician about prevention.¹⁰ Stigma is a significant barrier to screening.  In a survey in a general population of 338 people in Asia, 24.3% reported they would feel ashamed of having dementia and 37.7% would want to hide it from others. As a result, 80.2% would prefer not to know if they have dementia and 67.2% said they would avoid advanced care planning if diagnosed.⁷

Common misconceptions about Alzheimer’s Disease identified by nurses employed by the charity Dementia UK, include the belief that when you are diagnosed you will immediately be treated differently by friends and family, will have to give up driving, lose the ability to make decisions, manage finances and give up working. In fact, many people can continue driving and working following a diagnosis, and the diagnosis can be the gateway to specialist information and support that means that people can live independently for longer.¹¹

How can we support informed decisions about prevention and screening?

Making an informed decision means that you are aware of the choices and treatments available as well as the potential outcomes of these choices and that the decision is made with consideration of your values.¹² However providing information alone is unlikely to be sufficient. A cross sectional study found that the age group who would benefit most from dementia screening (those aged 70-79) were the least likely to accept screening for dementia than younger or older participants. The researchers believed this to be due to their increased experience with dementia and associated fear and stigma.¹³

The Fear of Dementia Scale was recently developed and validated for use in older adults and assesses fear of dementia across cognitive, social and physical dimensions.¹⁴ The ability to measure fear of dementia may help to modify stereotypes and target and address causes of fear in individuals.

To be effective, interventions should aim to identify and address barriers to screening and prevention. For example, by identifying and addressing concerns and misconceptions about dementia and the potential risks and benefits of preventative behaviours/screening, while facilitating access to appropriate support.

November is Alzheimer’s Awareness Month in the US. The Alzheimer’s Foundation of America website has resources to help individuals, families and caregivers: https://alzfdn.org/alzawarenessmonth/

References:

1. UK AsR. Perceptions of Dementia. Accessed August 2, 2022. https://www.dementiastatistics.org/statistics/perceptions-of-dementia/

2. NHS. Alzheimer’s disease Prevention Accessed August 2, 2022. https://www.nhs.uk/conditions/alzheimers-disease/prevention/#:~:text=stopping%20smoking,as%20you’re%20able%20to

3. Ferri CP, Prince M, Brayne C, et al. Global prevalence of dementia: a Delphi consensus study. Lancet. Dec 17 2005;366(9503):2112-7. doi:10.1016/s0140-6736(05)67889-0

4. Zhao C, Noble JM, Marder K, Hartman JS, Gu Y, Scarmeas N. Dietary Patterns, Physical Activity, Sleep, and Risk for Dementia and Cognitive Decline. Curr Nutr Rep. Dec 2018;7(4):335-345. doi:10.1007/s13668-018-0247-9

5. Kouloutbani K, Karteroliotis K, Politis A. [The effect of physical activity on dementia]. Psychiatriki. Apr-Jun 2019;30(2):142-155. doi:10.22365/jpsych.2019.302.142

6. Ahlskog JE, Geda YE, Graff-Radford NR, Petersen RC. Physical exercise as a preventive or disease-modifying treatment of dementia and brain aging. Mayo Clin Proc. Sep 2011;86(9):876-84. doi:10.4065/mcp.2011.0252

7. Tan WJ, Hong SI, Luo N, Lo TJ, Yap P. The Lay Public’s Understanding and Perception of Dementia in a Developed Asian Nation. Dement Geriatr Cogn Dis Extra. Jan 2012;2(1):433-44. doi:10.1159/000343079

8. Werner P. Preparedness for Alzheimer’s disease and its determinants among laypersons in Israel. Int Psychogeriatr. Feb 2012;24(2):205-11. doi:10.1017/s1041610211001803

9. Boustani MA, Justiss MD, Frame A, et al. Caregiver and noncaregiver attitudes toward dementia screening. J Am Geriatr Soc. Apr 2011;59(4):681-6. doi:10.1111/j.1532-5415.2011.03327.x

10. Maust DT, Solway E, Langa KM, et al. Perception of Dementia Risk and Preventive Actions Among US Adults Aged 50 to 64 Years. JAMA Neurology. 2020;77(2):259-262. doi:10.1001/jamaneurol.2019.3946

11. UK D. The most common misconceptions about Alzheimer’s disease revealed. Accessed July 21, 2022. https://www.dementiauk.org/the-most-common-misconceptions-about-alzheimers-disease-revealed/

12. Lewis CL, Pignone MP. Promoting informed decision-making in a primary care practice by implementing decision aids. N C Med J. Mar-Apr 2009;70(2):136-9.

13. Fowler NR, Boustani MA, Frame A, et al. Effect of patient perceptions on dementia screening in primary care. J Am Geriatr Soc. Jun 2012;60(6):1037-43. doi:10.1111/j.1532-5415.2012.03991.x

14. Lee M, Jung D. Development and Psychometric Evaluation of a Fear of Dementia Scale for Community-Dwelling Older Adults. J Nurs Res. Jun 2020;28(3):e94. doi:10.1097/jnr.0000000000000372