Dementia; the gendered experience.

In the United Kingdom there are currently 750,000 people diagnosed with dementia and that figure is expected to rise to 1.5 million by 2050. Despite the fact that over the years dementia awareness has increased, more research and improved health and care services are fundamental to eradicate the isolation, fear and despair many feel. The medical model of dementia views the condition as primarily a disease of the brain, this view has achieved paradigmatic status and is referred to as the standard paradigm. This paradigm conceptualizes dementia within an overwhelmingly negative framework with people going from normality through inevitable and tragic cognitive and physical degeneration to death. The main problem with this paradigm is that it appears to have little room for the lived reality of people diagnosed with dementia and gives intellectual credibility and authority to what is essentially a disaster view of cognitive loss. This has resulted in a depersonalization of the experience of dementia, voices of people with the condition and their carers have only until recently been conspicuously absent from mainstream narratives. The subjective experience is crucial in developing our understanding and explaining physical and behavioral manifestations of the condition. In this post I will focus on the experiences of women and dementia as their is a growing need to understand the sex-specific and gender dimensions of dementia as women continue to live longer than men. Women bear the brunt of dementia as sufferers as well as carers, and whilst carrying the stigma of the condition they are also faced with gender inequality and discrimination in the wider society. Dementia is a foreboding reality for women and it is the most disabling of all chronic diseases.  By approaching dementia through the prism of sex and gender I hope to explain the complexities of the interaction between biology and socially constructed roles.

The feminisation of ageing is explained in Sally-Marie Bamford and Trinley Walker’s article ‘Women and Dementia – Not Forgotten’ stating that women face a ‘triple jeopardy’ as a result of the associated stigma attached to their age, gender and decline in cognitive ability. Across the developed world people are living longer than before and in which women constitute the majority. However, Bamford and Walker argue that  just because women are living longer, it does not necessarily mean they are enjoying healthier lives. Old age and gender combine to create distinct challenges, especially when it comes to dementia. While they state that biological factors are significant in explaining the disability burden older women face, gender based discrimination and prolonged inequalities will also influence the incidence and prevalence of the condition.

The awareness and diagnosis of dementia is also a gendered experience and according to Banford and Walker deferentially contributes to health interventions and outcomes. Not only dementia itself but the wider social prejudice, discrimination and stigma surrounding ageing influence diagnosis rates. It is during this process where women may suffer greater disadvantage than their male counterparts. In their article Bamford and Walker argue that specific dementia symptoms are particularly powerfully stigmatizing both in the community and care settings. Disturbed behavior, poor self-care and incontinence are the main examples that can contribute to the stigma surrounding women and dementia. Not only are sufferers prone to stigmatization, care givers are also vulnerable to discrimination and prejudice. Bamford and Walker state that the majority of caregivers are women and they often find themselves blamed for the apparent state of neglect of their older relatives suffering from the condition. In terms of self-reported cases of dementia and contact with healthcare services, women are more likely than men to report poor health and access medical care. This is often due to gender stereotyping by doctors and psychiatrists. Bamford and Walker highlight how it is the institutional response in the treatment of mental health and they give the example that older women are more likely to be diagnosed as depressed despite presenting the same symptoms as men. It is impossible to ignore that women’s respective role and standing in society will influence the diagnosis of dementia. Without improving women’s overall position in society, dementia will remain to pose a significant challenge to old age.

The treatment and response to women diagnosed with dementia differ to that of men. Whilst there is no cure for dementia, there are treatments available which can help the cognitive, behavioral and psychological symptoms of the condition. Yet there is an absence of research on the sex-specific and gender dimensions of treatments and the differences in responses to medication. Bamford and Walker state that dementia clinical trials are weighted towards men, with very little participation from women despite the condition affecting more females. It is known that different types of Alzheimer affects males and females differently, for example vascular dementia affects more men than women. Also men and women with dementia experience different behaviors and symptoms. Men often demonstrate verbal incoherence, apathy and excessive sleeping and a propensity for aggressive behavior including sexual aggression. Women however show more reclusive behavior and intense mood changes, behaviors such as hoarding, refusing help and inappropriate laughter and crying are common. This stresses the importance of noticing and working on gender differences in dementia in order to improve medical treatments. Again the self-reported experience of women with dementia continues to be overlooked. Dementia is extremely subjective and the inclusion of women with early-stage dementia as an active participant in research can provide an in-depth understanding on the experience of dementia. What Mike Van Dijkhuizen states in his article, ‘Striving for Connection’, is that a helpful avenue for the understanding of subjective dementia experiences is provided by the literature on stress models for living with chronic illnesses. Dijkhuizen’s argument is that an individual’s social environment, life goals and values are important factors in understanding the impact of chronic disease. He found that older women tend to use more avoidant and emotion-focused coping styles and the extent to which women have had the opportunity to develop and maintain a variety of social roles may be relevant to their coping process. This leads on to what Dijkhuizen calls ‘connectedness’.  This is the connections a woman has with her past, family, friends and social roles as well as her environment. Dementia is a threat to women’s connectedness and produces feelings of distress, but in the face of possible disconnection supportive family relationships are central to the women’s ability to to maintain a sense of self. Social support therefore cushions the effects of memory problems and this reliance on family is a significant social strategy. Anxiety about the progressive degenerative nature and stigma of dementia may lead to avoidance strategies being employed by the woman herself as well as carers and professionals, the threats to connectedness may promote strategies whereby the embarrassment and potential humiliation of memory loss are dealt with by a way of minimization or covering up with humor. From Dijkhuizen’s article it is clear that women’s coping seems more crucially dependent on the interpersonal context and this reflects the gender differences in valued aspects of self-identity. Traditional male gender roles emphasize autonomy whereas women’s self identity tends to be based more on their ability to develop and maintain relationships. According to Dijkhuizen a loss or disruption of a relationship through cognitive impairment such as dementia, may thus be perceived as a loss of identity. All of this research suggests that support for women suffering from dementia should focus on the person’s history and values in the context of person-centered care and proposes that interventions should involve the woman’s wider network of family and friends.

When talking about dementia it is extremely important to talk about care and care-givers. Social care plays an important role in treating the condition and family members play an integral part in the process. Yet Bamford and Walker’s article interestingly states that often “family care is considered a euphemism for female care” and women form the cornerstone of care in many communities. The strong societal pressures cause women to conform to specified gender roles which is that of the nurturing caregiver. Women are recognized as the primary carers  and therefore have multiple caring responsibilities for other family members. The cost of caring is profound for many women, not only can it cause financial hardship but can result in social isolation and mental and physical health problems. According to Lisa Gallicchio’s article, ‘Gender Differences in burden and depression among informal caregivers’, more than 8.5 million Americans provide informal, unpaid care to those suffering from a variety of behaviorally, functionally ad cognitively impaired elderly individuals in the community. And an estimated five million care for a dementia patient at home. Because of the ageing of the world’s population and the fact that the prevalence of dementia doubles every five years after the age of sixty-five, it is expected that the number of informal, community-based caregivers for dementia patients will increase dramatically. This is why understanding the impact of care-giving is critical in maintaining the mental and physical health of the caregiver. According to Gallicchio, women compromise approximately seventy percent of the care-giving population in the United States and seventy-three percent provide care for an individual with dementia. It is important to recognize that there is a lack of knowledge on men as caregivers, this is partly because women have been thrust into the care-giving role as women’s life expectancy is longer and men have generally married younger women. But what the article points out is that the impact of care-giving on male well being cannot be ignored, the numbers of male carers will increase as more women live longer and are diagnosed with the condition. However as we turn are focus back to the present, numerous studies, including Gallicchio’s, show that the majority of caregivers are female, spouses or children of dementia patients, are living with the patient, are not employed, have no in-household help and perceive themselves as having good physical and mental health. Women have to deal with high levels of care burden, finding themselves thrust into this position reluctantly and often ill-equipped. As this article has shown, women have been found to have more frequent, intensive and effective involvement when in the care-giving role. Thus adequate assistance must be given to women caregivers to ensure that they are not strained beyond what is considered clinically healthy. The level of care for dementia patients is something that has only recently entered the public sphere with reports of serious abuse toward those in the later stages of dementia where they are most vulnerable. The mistreatment of dementia patients is arguably all the pernicious given their vulnerable status and has too often been under-reported. Insufficient attention and priority has left many women particularly susceptible to abuse given their increased numbers with the condition. It seems that women disproportionately bear the burden of dementia, with particular regard to either living with the condition and/or caring for family members.

Whilst we have recognized that dementia effects and impacts women differently than it does men, there needs now to be a focus on how we treat and help women affected by dementia. Creating awareness and reversing the stigma surrounding women with dementia is crucial. This year the National Health Service in the U.K embarked on a new campaign to raise awareness of such issues to help hospital staff and community carers. The campaign is a short film about Barbara and her experiences of dementia and aims to remind people how important everyone’s contribution is when it comes to creating a safe and positive environment for women with dementia.

The powerful video is seen from the dementia patients perspective and reveals her bewildering, confusing and sometimes frightening experiences of dealing with the healthcare system. Research by the Alzheimer’s Association shows that nearly two-thirds of people with dementia experience loneliness and almost half report a loss of friends following their diagnosis. This refers back to Dijkhuizen’s idea of connectedness and the need to provide female sufferers a network of support in order to maintain a sense of personal identity. That is why the Alzheimer’s Society in the U.K last year launched its largest social movement – ‘Dementia Friends’ which encouraged the public to sign up to learn more about the condition. By providing an understanding of dementia, the organisation hopes to tackle the stigma that see’s so many people face social exclusion. The movement uses face-to-face sessions with volunteer advisers in communities, schools and workplaces along with online videos to help explain dementia. The impact ordinary people have on reducing the stigma of dementia is immense and only through education can the care and support of dementia patients be improved. Yet cuts to healthcare budgets and a reliance on the voluntary sector does little to promote and help the cause. Without adequate funding for services and staff training it is clear that with an ageing population the dementia crisis is only going to escalate.

In terms of care for women with dementia, the nature of women’s role is largely hidden and forgotten. This discrimination and stigma is reflected in the persistent inequalities still face in society as a whole. Women are currently at the epicenter of the dementia crisis, not only are they more likely to develop the condition but they are also more likely to be caregivers of those with dementia. Women caregivers provide more intense care for longer periods of time and such care-giving responsibilities take a toll on women’s health and well being. It is society’s traditional social norms that force women who are often reluctant and ill-prepared into the care giving role. The medical model of dementia ignores the subjectivity of the condition and therefore ignores the experiences of women. There is a real need to start to view the condition through the prism of sex and gender which also allows for the experiences of gays and lesbians with dementia to be seen and heard. The medical model too often focuses on the negative consequences of dementia and whilst it is one of the most debilitating and heartbreaking conditions, a focus on support and education can help maintain someones personal identity as long as possible. There may be a long time until science can find a cure for dementia and with an ever ageing population resources and support funding needs to take top priority in order to prevent the crisis escalating any further.


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