Eamon O’Shea: New direction for dementia care

dementiaProfessor Eamon O’Shea of the Irish Centre for Social Gerontology at NUI Galway outlines a new direction for dementia policy in Ireland. Holistic treatment, rather than institutional care is essential, he argues.

The Programme for Government contains a commitment to develop a national strategy for dementia by 2013, which will increase awareness, ensure early diagnosis and intervention, and enhance community-based services for people living with this condition. The number of people with dementia in Ireland is currently estimated at 41,447. By 2041, numbers will have more than tripled to between 141,000 and 147,000 people. There is still a great stigma attached to a diagnosis of dementia and the financial, emotional, economic and social costs of the disease are very high. Public knowledge about dementia is improving, but attitudes remain largely pessimistic and nihilistic, and services are patchy, fragmented and poorly integrated.

It is no wonder, therefore, that stakeholders anxiously await the development and publication of the new strategy. But it is not at all certain that the strategy will deliver a radical overhaul of the care of people with dementia. For this to happen, the current policy frame must be jettisoned in favour of a new paradigm that recognises the narrowness of the current mind-set.  The opportunity now exists to develop a more appropriate counter-policy frame.

Within the current policy frame, dementia is characterised in individual and biological terms. People get the disease and face it, by and large, on their own within their families and, if they are fortunate, with the support of appropriate medical teams and the Alzheimer Society of Ireland. Policy makers also associate dementia with risk, resulting in a bias towards institutional care where people with the disease can be cared for in a secure environment. People with dementia are viewed in deficit and pitiful terms, and tend to experience exclusion from mainstream society.

There is an alternative policy frame that replaces individual with collective, biological with social, risk with capabilities, institution with home, deficits with assets, and exclusion with inclusion. Reconfiguring the policy vista for dementia would allow for the potential of the strategy to be fully realised and care for people with dementia to become truly holistic and person-centred.

What would this counter-policy frame look like? Replacing individual with collective would mean the disease becoming more public, more normal, more visible, more explicit, more touchable, more part of me now and later. Moving from biological to social would allow us to hear the voice of the person with dementia directly, thereby facilitating greater discussion of the meaning of attachment, place, identity and relationships. This would challenge families and communities to develop a communal approach to the disease that prioritised openness, connectivity and mutual support systems.

Replacing risk with capabilities would allow the potential of people with dementia to be realised during all stages of the disease, particularly in the early stages of the illness.  People with dementia have physical, emotional and spiritual attributes that require nurturing, very often through psychosocial interventions, if the various and complex dimensions of their personhood are to be realised. Sometimes this means taking chances with care structures and care processes to allow people with dementia to live as normally as possible in flexible, accessible and familiar environments.

For the most part people with dementia should live in their own homes where self and identity are easier to preserve in the face of on-going cognitive decline. Even when people with the disease have to enter residential care, the emphasis should be on homely small-scale provision where biography and personality are central to the care process and personal autonomy is preserved as much as possible.

Seeing people with dementia as assets to be cherished can be of enormous transformative value to the society within which they live. People with dementia are citizens with inalienable human and civil rights that must be protected. They continue to have roles and relationships within families and communities that serve to enhance overall well-being through maintaining the integrity of the human spirit.

People with dementia are better off when treated with respect and dignity, but so too is society. The ‘power of now’ should never be under-estimated in the care of people with dementia. Making people with dementia happy by seeking to penetrate usable memory and latent connections should be central to the day-to-day care process.  Through a focus on inclusion, people with dementia will become more visible in society, leading to greater awareness of the disease and an acceptance of the need for a public response in the form of improved services and community-based support systems.

More fundamentally, adopting the counter-policy frame for dementia outlined above will lead to a seismic change in how people think individually and collectively about the disease. This includes more enlightened personal attitudes and expectations about dementia, a new and less fearful awareness and understanding of the various stages of the illness and a recognition that dementia is the single most important ageing question that must be faced in the coming decades. This may in turn lead to a mobilisation of intellectual resources in support of a liberating dementia strategy, agreement of key priorities and a practical emphasis on personhood for people with the disease.

Let us make the adoption of a new, person-centred, policy frame the first step in the development of the upcoming national strategy for dementia.

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