People with dementia face an identity crisis – who am I – who will I become? One major fear is the loss of self associated with dementia, and we face an existential crisis of identity. Our sense of self is shattered with this new label of dementia. Who am I, if I can no longer be a valued member of society? What if I don’t know my family, if I don’t know who I am and who I was? The inner fear of the loss of self, and loss of identity, is exacerbated by the outer stripping away of who we once were. Dementia brings a fear of the future, of decline and of death in a state of unknowing. Many people with younger onset dementia can no longer be defined by their work; therefore they are less valued by society, and often by themselves.
Exclusion from many activities brings further isolation. The other people affected are their families, especially parents and children for those with younger onset dementia ; it brings a new level of responsibility and caring to them; for parents it does not fit the natural order of life, i.e. they are meant to decline before us. It affects our intimate relationships, our sexuality and our connectedness. Seek to understand what is happening to a person with dementia – not from a clinical perspective, but from their personal inner experience. Get to the heart of the matter and ask the personal questions before getting to the ‘fix-it’ topics items on your agendas. Define people with dementia by who they still are… mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties, rather than by the symptoms of the disease – forgetful, confused, aggressive, angry, odd behaviour, absconders, mute or refusing to communicate.
Focus on what a person can still do, rather than the deficits. Many people diagnosed with dementia have a terrible fear about their future, and how it will feel to die with this disease. An interesting comment I continually hear from people with younger onset dementia is when they leave work, because of the symptoms of dementia, they do not get the usual farewell from their colleagues and employers. This happened to me, and was the only time in my working life my contribution was not acknowledged, nor was I farewelled in the usual way. This type of behaviour contributes greatly to impacting our sense of identity, our self esteem and to feeling valued, and isolates us further. The dementia train is one wild, and occasionally wonderful ride, but for me, the sense of losing my identity, and the isolation are perhaps the roughest on the journey.