Models Of Dementia Care

28 Jun, 2013 by

Models Of Dementia Care


Models Of Dementia Care – Professor Julian Hughes presented this Alzheimer’s Australia event in Brisbane. This post provides a summary of my learnings.







Models Of Dementia Care

Julian Hughes 2Professor Julian Hughes is currently touring australia with Alzheimer’s Australia presenting the paper he has written for them ‘Models Of Dementia Care: Person-centred, Palliative and Supportive’. I attended his presentation in Brisbane and am providing a brief overview here along with a link to download the discussion paper.

Professor Julian Hughes

Professor Julian Hughes is:

  • Consultant in old age psychiatry at North Tyneside General Hospital in the UK;
  • Honorary Professor of the Philosophy of Ageing at the Institute for Ageing and Health at Newcastle University in the UK;
  • His most recent book: Thinking Through Dementia published by Oxford University Press.

His profile page at the Institute For Ageing and health states:

My areas of academic interest are:

(a) the notion of personhood, especially related to dementia, and the ethical implications that flow from a particular understanding of personhood;

(b) palliative care and the consequent ethical issues that arise for people with dementia and their carers; and

(c) the underpinning conceptual and ethical bases of legal concepts relevant to clinical practice in old age medicine and psychiatry.

My strategy has two main prongs: to build up our understanding of the conceptual underpinning of clinical practice; and to investigate the nature of ethical dilemmas inherent to clinical practice in relation to ageing.

Presentation Summary

I shall attempt to summarise the presentation here, but recommend readers download the full paper as well.

Dementia – Normal Ageing?

There is good reason to suggest that dementia is not a part of normal ageing. The main reason being that most older people do not develop dementia – for people over the age of 80, the prevalence is about 20%. People are far more likely to develop heart conditions or cancer yet these are not considered a normal part of ageing. However, a degree of cognitive abilities (memory and reasoning for example) do decline with normal ageing, the challenge is how does one decide what level of memory loss if ‘normal’.

So, on the one hand, it is important to say that dementia is a disease, which may cause suffering to the person concerned and to those around. On the other hand, we must not stigmatize people with dementia; and we must not allow our worries about dementia and cognitive impairment to position all older people as, in some way, deficient or potentially so. How we think of people with dementia will affect how we treat them, individually and as a society (Hughes 2011b).

Dementia  A terminal Condition

We then have to consider whether dementia should be considered a terminal condition. Whilst most would agree that dementia is not reversible,  diagnosis of dementia does not imply the end of a meaningful life. One the one hand, to think of someone as terminally ill can possibly be at odds with  facilitating a desire to help someone live a full and active life. On the other, seeing dementia as a condition that will inevitably lead to death, can help focus attention on things that really matter and allow families to make appropriate plans. The challenge is to make these years of life as good as possible

We can do this by focusing on how it is possible to live well with dementia, whilst still acknowledging the problems and suffering that it can cause. We can do this, too, by adopting a philosophy which encourages the right approach to people with dementia.

Philosophy Of Care

The Professor then compared three types of care:

  • Person-centrered Care – promotes the rights and perspectives of the individual with dementia however it does not consider dementia as an end of life issue and provide specific guidance on difficult decisions such as withdrawal of medical interventions;
  • Palliative Care – key aspect of palliative care are
    • Life is affirmed and people are encouraged as well as they can accepting the inevitability of death;
    • Distressing symptoms should be treated whilst maintaining quality of life;
    • Care must be holistic including biological, psychological, social and spiritual and include the family and friends.
  • Supportive Care – an even broader approach which has been defined as “…a full mixture of biomedical dementia care, with good quality, person-centred, psychosocial, and spiritual care under the umbrella of holistic palliative care throughout the course of the person’s experience of dementia, from diagnosis until death and, for families and close carers, beyond.” (Hughes et al. 2010: p.301).
Elements Of Supportive Care

Click To Enlarge

A key point for me of what Professor Hughes said when describing Supportive Care is that to practice it, practitioners must put aside ‘models of care’ because as soon as one has a model in mind one tries to fit a person’s symptoms/situation to the model. Instead, one must listen to the person and fully understand their symptoms/situation and then draw upon various models that might help to improve their quality of life.

The table to the right (click to enlarge)  shows some of the components of Supportive Care for a person with dementia to be considered if we are to help them live and die well.

Nonetheless, for the person with dementia and for his or her carers, a good deal of guidance is required if they are to be able to benefit from the rich possibilities of good quality supportive care.

Pathways Of Care

The Professor talked about how it will not be possible to offer a definitive care pathway, but that we can know that  the person with dementia will enter certain terrains in which outlines are known and their are clearer routes to take – however, these will vary from person to person.

The person on the dementia journey does not set off alone, there are various people involved including friends, family and professionals. along the way they will need support with issues including:

  • Ethical and legal
  • Spiritual
  • Social
  • Psychological; and
  • Biological

But what this does not show is the levels of support a dementia journeyer will require from friends, family and professionals in each terrain, at the different stages of their journey. The chart below shows how the levels of care in each of the terrains might change over the dementia journey:

Changing Domains of supportive care


Professor Hughes offers suggestions as to what must be done if the vision of person-centred, palliative and supportive dementia care is to be achieved:
  • At the personal level, people with dementia, supported in solidarity by their family, friends, professional carers and community, must seek ways to live well (Nuffield Council on Bioethics 2009).
  • At the personal level, professionals must embrace therapeutic optimism and rule out nothing if it might help the person with dementia to live life to the full (Small et al. 2007; p. 206).
  • Professionals and families must also learn to accept that when investigations or treatments are ineffective or burdensome, they are not morally obligatory, even if it remains a moral imperative to provide comfort and dignity (Hughes 2010).
  • Care homes must move from being institutions to become therapeutic communities (Small et al. 2007; p. 206).
  • Voluntary organizations must encourage endeavours which support optimism and establish dementia-friendly communities and environments.7
  • Public organizations and governments must create the foundations for supportive care throughout the course of dementia and must facilitate compassionate and effective health and social care, which takes account of the experiences and real narratives of people with dementia and their carers up to death and beyond.
  • Society must embrace the possibilities of dementia, reject stigmatizing attitudes, support inclusion and look for ways in which dementia might be a source of joy even in the midst of decline (Greenblat 2012).

Download The Alzheimer’s Australia Report

Alzheimer’s Australia have made this report free available on their website, and you can download the PDF version by clicking the button below:

Download Model Of Dementia Report


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