Dementia Beyond The Brain and The Overlooked Majority of Women

Dementia is often reduced to a disease of forgetfulness. There is a common

misconception that dementia is a "normal" part of ageing, as something inevitable. This can leave both patients and family confused, with conflicting terminology. Particularly in the early stages of disease, symptoms can be subtle. The raising of public awareness and a more widespread understanding of dementia is essential in order for timely diagnosis, and to improve treatment and symptoms of those suffering.

I am currently studying an MScR in Neuroscience, which has really opened my eyes to what underpins dementia, challenging my own assumptions about the condition. I, like many others, have often thought dementia as only a condition of memory loss. I am currently researching the secondary neurodegeneration involved in dementia in a stroke and dementia laboratory. Whilst I am only researching one small aspect of the condition, I have come to appreciate that this is one part of an extremely complex condition. What has particularly changed my perspective is not primarily researching the condition at the cellular level, but in researching the clinical side, understanding the lived experience of an individual with the disease. Dementia takes a toll on the individual psychologically in more ways than memory, it affects emotional regulation, personality and personal relationships. In many cases, families notice behavioural changes long before these symptoms are recognised as dementia, such as agitation, irritability and changes in sleep habits (Ringman et al., 2015).

Dementia is a diverse disorder with many ways of presenting: Alzheimer’s

dementia, vascular dementia, and frontotemporal dementia are among the

most common. Behavioural and psychological symptoms affect 98% of patients, which are associated with more rapid disease progression and increased

caregiver burden (Peters et al., 2015). While these symptoms are often less publicly discussed, they can become the most distressing symptoms of the disease for both

patients and their families. Social withdrawal, emotional instability and

personality changes can reshape a family dynamic. Despite this, there are still

barriers to accessing dementia services across the UK, they come with stigma

and denial of the disease. Earlier recognition of symptoms, and adequate

treatment of these may alter disease course and improve patient and even

caregiver quality of life through reduced distress, and the improved management of symptoms (Cheng et al., 2022).

Alongside the social and behavioural aspects of dementia, to fully understand

these symptoms of dementia, we must investigate what occurs within the

brain itself. Research now shows dementia isn’t confined to the memory

centres of the brain, but damage is widely distributed throughout white matter

pathways responsible for communication between brain regions. While neural

systems are affected, cognition, emotional regulation, behaviour and

movement all deteriorates. In many ways, dementia behaves similarly socially.

How Dementia extends beyond the individual

Outside of the individual suffering from the disease, much like how dementia

spreads throughout the brain, it spreads throughout an individual’s entire

social system. A diagnosis can change family roles, alter communication, affect the individuals’ independence and place an increased day-to-day emotional and practical demands. Due to financial costs, family members are often the primary care-giver, and women sit at the centre of this. It strikes me how rarely this forms part of the conversation on dementia, while it is important to focus on the individual receiving the diagnosis, much of the disease is experienced by people quietly adapting their own lives to it.

The cost of caring for people with dementia is profound, carers report financial hardship, isolation and mental health problems (Bamford & Walker, 2012). Women are still widely recognised as the primary care-givers in the informal home setting, with more societal pressure on women to take on the role over a man, thus are more likely to take on this role. There is a need for better access to information about dementia in the UK. US studies have shown that improved access to social care is associated with fewer hospital admissions (Bajwa et al., 2025). Distress for both patient and carer can be significantly reduced, simply by knowing what to expect.

Alongside the increased likelihood of being the primary caregiver, women are

also more likely to develop dementia. There are currently at least 500,000 women in the UK with dementia (Alzheimers UK). Furthermore, women are more likely to be prescribed antipsychotics over men, for longer periods of time (Aguzzoli et al., 2025). Neuropsychiatric symptoms (NPS) are a significant but overlooked aspect of dementia. These symptoms include changes in mood, behaviour, perception and emotional regulation (reference), they can occur due to interactions between biological, psychological and environmental factors. NPS’s can be exacerbated by changes in a routine, over-stimulating environment, whilst those with early life adversity and lower socio-economic status may increase vulnerability (Tampi, 2023). 

Despite the fact that women are associated with higher prevalence and greater severity of

these symptoms (Eikelboom et al., 2022), yet historically, women have repeatedly been excluded from clinical trials and neuroscience research. This creates a significant gap in our understanding of a disease that disproportionately affects women (Kolahchi et al., 2024), we risk developing an incomplete picture of the disease and how it should be treated. 

This issue extends beyond human studies. Even within a laboratory setting,

female mice have historically been excluded from experiments due to concerns that hormonal fluctuations would introduce excessive variability into results. However, this assumption has increasingly been challenged, with evidence suggesting that female mice are not inherently more variable than males (Prendergast et al., 2014), challenging one of the long-standing justifications for their exclusion in neuroscience research. Despite this, many studies still fail to include equal representation of male and female animals. 

As of 2021, only a ⅓ of studies included both male and female mice (Waters & Laitner, 2021), despite growing evidence for the importance of including females in dementia research.

Research suggests that symptoms can present differently in men and women (Aguzzoili et al., 2025). Women tend to show reclusive behaviour and intense mood changes, whereas

men may be more likely to demonstrate verbal incoherence, apathy, excessive sleeping (Eikelboom et al., 2022). These differences highlight the importance and the gravity of the situation. Dementia is more than memory and is deeply

individual.

Whilst public understanding of the disease continues to improve, there are many factors at play that influence dementia and the quality of lives of those affected by it. Dementia is far more than memory loss. It’s a complex neurological condition reshaping the behaviour, identity and relationships of an individual. Much of the disease can remain invisible, from gradual neural changes in the brain, to the emotional toll it can take on caregivers and

families. Women remain central to this reality in more ways than one. Whilst insight into the disease has improved significantly over recent years, better representation is

required in research, for a better public understanding to take place.

For further listening

A podcast ran by Dementia Research UK, they explore dementia science and lived experience: please click here!

References

• Aguzzoli, E., Walbaum, M., Knapp, M., Castro-Aldrete, L., Santuccione Chadha, A., & Cyhlarova, E. (2025). Sex and gender differences in access, quality of care, and effectiveness of treatment in dementia: a scoping review of studies up to 2024. Archives of Public Health, 83(1), 139.

• Bajwa, R., Hanjari, M., Al-Oraibi, A., Akyea, R., Brar, M., Robinson, L., ... & Bains, M. (2025). Qualitative study exploring knowledge and attitudes towards dementia risk prediction, barriers to dementia services and service improvement recommendations with diverse populations in England. BMJ open, 15(5), e092370.

• Bamford, S. M., & Walker, T. (2012). Women and dementia–not forgotten. Maturitas, 73(2), 121-126.

• Cheng, S.T., Li, K.K., Or, P.P. and Losada, A., 2022. Do caregiver interventions improve outcomes in relatives with dementia and mild cognitive impairment? A comprehensive systematic review and meta-analysis. Psychology and Aging, 37(8), p.929. 

• Eikelboom, W. S., Pan, M., Ossenkoppele, R., Coesmans, M., Gatchel, J. R., Ismail, Z., ... & Papma, J. M. (2022). Sex differences in neuropsychiatric symptoms in Alzheimer’s disease dementia: a meta-analysis. Alzheimer's research & therapy, 14(1), 48.

• Kolahchi, Z., Henkel, N., Eladawi, M.A., Villarreal, E.C., Kandimalla, P., Lundh, A., McCullumsmith, R.E. and Cuevas, E., 2024. Sex and gender differences in Alzheimer’s disease: genetic, hormonal, and inflammation impacts. International journal of molecular sciences, 25(15), p.8485.  

• Peters, M. E., & Lyketsos, C. G. (2015). Beyond memory: a focus on the other neuropsychiatric symptoms of dementia. The American journal of geriatric psychiatry: official journal of the American Association for Geriatric Psychiatry, 23(2), 115.

• Prendergast, B.J., Onishi, K.G. and Zucker, I., 2014. Female mice liberated for inclusion in neuroscience and biomedical research. Neuroscience & Biobehavioral Reviews, 40, pp.1-5. 

• Ringman, J.M., Liang, L.J., Zhou, Y., Vangala, S., Teng, E., Kremen, S., Wharton, D., Goate, A., Marcus, D.S., Farlow, M. and Ghetti, B., 2015. Early behavioural changes in familial Alzheimer’s disease in the Dominantly Inherited Alzheimer Network. Brain, 138(4), pp.1036-1045. 

• Tampi, R. R. (2023). Malnutrition and neuropsychiatric symptoms (NPS) of dementia: Commentary on “Malnutrition and Neuropsychiatric Symptoms in Dementia: The Cache County Dementia Progression Study” by Kauzor et al. International Psychogeriatrics, 35(11), 604-607.

• Waters A, Society for Women's Health Research Alzheimer's Disease Network, Laitner MH. Biological sex differences in Alzheimer's preclinical research: A call to action. Alzheimer's Dement. 2021; 7:e12111

• Women and Dementia: A Marginalised Majority, Alzheimer’s Research UK

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This article was written by Lucy Allen and edited by Clarise Castleman, with graphics produced by Lilly Green. If you enjoyed this article, be the first to be notified about new posts by signing up to become a WiNUK member (top right of this page)! Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch.