Submitted by Susan Dunkley
As a Woman, is It Possible to Live Well With Dementia?
Dementia disproportionately affects women. More women than men develop dementia, and a large proportion of carers are women, in both informal and formal capacities. There is often no governmental organization or programmes to address the problems associated with dementia, either for the person with dementia or to support the caregiver. Expectations are made in many countries that families will look after older relatives, including those with dementia. This expectation often extends to it being the women in the family who takes on this direct caregiving role. There is often reluctance amongst women caregivers to access help from formal and informal support services, due to conflicts between cultural and family expectations or the ability and willingness to seek help on the part of the caregiver. Women will continue to provide care, whether this is due to societal expectations, or an individual wish to support members of their family and friends. Whatever their motivation, there needs to be adequate and appropriate information and support in place.
For women who develop dementia, it can be difficult for themselves and others to accept the change in their role and identity. The shift from being the main caregiver within the family to the one now needing to be cared for is a profound one that is often resisted. Recognizing the need for help and accepting support is different for men and for women. Likewise, maintaining identity and independence is a strong personal driver for many experiencing the symptoms of dementia. The concept of ‘grateful guilt’ looks at the dynamics of mothers being cared for by their daughters. This is a strong driver for mothers not wanting to be a burden on their families but at the same time being grateful for the help they received from daughters. This type of clashing emotional state can trigger conflict within families. When caring for a women with dementia and assessing care needs, the wider family dynamics and interactions, including her role prior to the onset of dementia should be considered. Care needs to be provided in a way that meets the needs of the person with dementia without causing feelings of guilt.
Whether a man or a woman, it is important to remember that life doesn’t end when Alzheimer’s begins. People living with dementia can continue to participate in life and contribute to their communities – in their own way, even as the disease progresses. Words and actions are powerful and can change the story of dementia. That’s the goal of this years Alzheimer Society campaign – to dispel the myths around what it means to live with dementia and encourage all of us to see the person beyond the condition. Recognizing that a diagnosis of dementia doesn’t rob someone of their individuality or their feelings goes a long way towards respecting and engaging people with this disease and preserving their identity. Our cognitive abilities alone do not define us. People with dementia can continue to engage with the world in many other meaningful ways. And supporting their dignity and worth, improves their well-being and quality of life.
Consider getting involved with our #StillHere campaign at www.alzheimer.ca
- Watch a 30-second video and share it with others
- Complete an online quiz to test your basic knowledge and assumptions about dementia
- Read personal stories from people living with dementia, and share your own experience
- Get practical advice on how you can support people with this disease or support your local Alzheimer Society
- Become a Dementia Friend
- Volunteer at the Alzheimer Society Office
- Consider supporting one of the events that allow our office to provide support at no cost to families living with this disease