It is often said that people with dementia lose their identity, but is this true and what does it mean?

What we choose to do in life relates closely to our identity. One of the first questions someone who meets you for the first time will ask is: ‘What do you do?’ It is, of course, an interesting topic to explore; after all, we spend a lot of time in our lives at work and we are conditioned to believe that work is important, which it is. Having a strong work ethic is an admirable attribute. Our job choice or career gives us purpose and an identity.

Relationship-based roles define our identity too: being a parent, wife, husband, partner, son, daughter. Personality traits have an influence, together with fundamental aspects of our existence, such as gender, culture, beliefs, sexuality and faith. Each person has their own unique identity: our identity is the very essence of who we are, the way we think about ourselves and how others see us. Identity is about values, life history and moral compass.

Identity can feel fragile when we face life-changing situations, which force us to re-evaluate our purpose and reason for being. Receiving a diagnosis of dementia would certainly qualify as one of those life-changing situations.

Kate Swaffer, diagnosed with a rare form of dementia (Semantic Variant Primary Progressive Aphasia) at the age of 49, describes this as an ‘identity crisis’. Kate is a campaigner and writer. In her blog entitled ‘Identity, isolation and dementia’  she reflects candidly on her own experience of loss of identity:

“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”.

Carers, too, often feel lost and uncertain about their identity as their everyday life becomes consumed by the evolving demands of caring for a relative or friend with dementia. Whether that relationship was loving and respectful before the onset of the condition, or was troubled and problematic, the relationship is at the heart of the caring situation and the carer becomes defined by it. This is a complex set of dynamics. It is understandable that carers feel their own sense of self is compromised.

As a society, we should be validating people who identify as ‘carers’, they make a vital contribution to the health and care economy. Carers should stand tall and be proud.

Sue Gregory cares for her husband, John, diagnosed with Alzheimer’s in his fifties. She gave up work to look after him. Sue says, about this life-change: “I miss going out to work sometimes, but I consider my job as a carer to be just as important as my job as a mother”.

Perhaps one of the most amazing talents of human beings is that we can adapt and develop our identities in response to changing circumstances and situations? Knowing ourselves and holding on to the core of who we are demonstrates strength and equips us with resilience.

Identity is a key element of Tom Kitwood’s framework for person-centred care. Kitwood described identity (in the context of dementia) as being: “…… to know who one is, in cognition and in feeling. It means having a sense of continuity with the past; and hence a ‘narrative,’ a story to present to others”. He described how, due to declining cognition, people with dementia need others to ‘hold their story’ and to respond to the ‘uniqueness of their being” (Kitwood, 1997).

Kate Swaffer concurs with the principles of personhood and person-centred care.

She says: “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”.

Perhaps the question of identity for people with dementia is about change rather than loss? Everyone has an identity. Patrick says of his wife, Sam, who has Alzheimer’s: “She is still Sam, she is different to the person she was before she developed dementia. Many of her traits are still evident, but she has a different identity now”.

Do you feel that your identity has changed since becoming a carer? Is caring a role or are proud of, or do you feel ‘invisible’ and that your efforts are unrecognised and unrewarded.

Contact me at askbarbara@unforgettable.org