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The quality of life priorities for people living with dementia, their relatives and carers


Thomas Jelley

- Seniors

- Sep 21 2016

In a report to be published in October, the Sodexo Institute for Quality of Life sets out the findings of a round-table on memory care recently held with US and Canadian experts from academia, business and NGOs. On the occasion of World Alzheimer’s day, we preview the priorities identified from a Quality of Life perspective for people living with dementia, their relatives and carers.


Firstly, while we have a myriad concerns, hopes and opportunities to choose from, the language we use will play a role in whether, how well and how soon we take action to improve Quality of Life for those living with dementia, their relatives and carers. This language must be informed by the words and meaning of indi­viduals who live with dementia.

 

Language is a priority for many rea­sons, including the need for care to benefit from a new narrative to underpin a renewed shared sense of purpose. This narrative should reflect that within ‘memory care’ there is not ‘just’ a loss of memory but a broad range of challen­ges that could be better addressed with greater understanding of symptoms. An aim of a renewed shared sense of purpose should be to integrate care in our communities rather than concentrate it in isolated ‘facilities’. It should also shape our philosophy so that we grow beyond the ritual of ‘programs’. What would this look like? Suggestions based on experience of multi-generational and community engagement include mutually beneficial sharing, as a matter of course, of cherished activities that can be meaningful at very different levels of cognitive and physical ability such as music, exercise, story-telling, gardening and cooking. The place of this mutually beneficial sharing is easily undervalued in discourse that is framed in terms of one-way care and support.

 

Still a Person – Dementia’s Impact on Quality of Life

 

With a common language and narrative befitting a modern philosophy of care, we stand a better chance of being able to exchange and replicate success sto­ries, of developing and following standards. We may also find it easier to re­verse predictions of a large deficit of professional care by making memory care more attractive and accessible to people from a wide range of occupational backgrounds. Arguably, this is not just about organic growth in the number of people working in care-related jobs, an evolutionary adaptation to demographic necessity, or iterative role development. It is about purposefully rising up to address a fundamental societal challenge that will need a complex multi-dis­ciplinary, policy-level response, but which is already stimulating technological innovation. A snap-shot of the range of quality of life-enhancing products and services already available gives an indication of progress: 

- a smartphone app that combines a visual diary with images and background information, contact details and automatic reminders to help people main­tain their autonomy

- eye movement-based early diagnostics of cognitive decline

- an app that helps carers to manage medication and appointment information by storing it and enabling sharing with others, which can also help them to keep track of and interact with professional carers

- virtual reality systems that can help to relieve chronic pain, change behavior or confront fears by helping individuals draw on their own inner resources

- wearable protective devices that deploy cushioning airbags in the event of a fall

 

Some of these technological advances are consistent with the call to broaden our ambitions made by those who challenge us to consider the full range of engage­ment and contribution to care that is possible through enriching artistic, musical, gardening or cooking activity. If we fail to identify and consider advances, we risk presenting decision-makers with nothing more than a resources problem even if technological innovation is in its relative infancy and needs to be tested at scale while issues of cost, usability, privacy, care-substitution, ethics and regulation remain.
 

In the context of policy and funding, there is concern that the ‘gold-standard’ of scientific research, the randomized controlled trial, prevents actions that are not measured or studied but may nevertheless contribute to psycho-social and spiritual wellbeing. An epistemological challenge has been set and it needs to be addressed to bridge a chasm between diverse approaches.
 

At the heart of empathy and how we think of autonomy is getting people to understand what the experience of dementia is like for all involved. This should come through continuous listening and engagement rather than from opinions formed out of context. Understanding is the precursor to unlocking the first priority for the Quality of Life of those living with dementia and by extension their relatives and carers: not to be stigmatized, but to be treated as a person. In this, the delicate balance between safety and autonomy, managing risks while promoting engagement in meaningful activity, is essential.


 

Download the report on Treat me like a person, because that is what I still am, a report following a round-table in partnership between Planetree and the Sodexo Institute for Quality of Life

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The quality of life priorities for people living with dementia, their relatives and carers

In a report to be published in October, the Sodexo Institute for Quality of Life sets out the findings of a round-table on memory care recently held with US and Canadian experts from academia, business and NGOs. On the occasion of World Alzheimer’s day, we preview the priorities identified from a Quality of Life perspective for people living with dementia, their relatives and carers.

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