Respect a model of spiritual care for those living with dementia

1. Respecta model of spiritual care for those living with dementia Spirituality and Mental Health Conference: Sharing Good Practice Durham July 6-8 2011

2. MHA (Methodist Homes)‘to improve the quality of life for older people inspired by Christian concern’ • 70 years • 13,500 service users • Live at home schemes • Independent living apartments • Care homes: residential residential dementia nursing nursing dementia palliative care

3. MHA values • We will strive for excellence in everything we do • We will meet everyone’s spiritual needs along with their other needs • We will respect every person as a unique individual • We will treat others with the dignity we wish for ourselves • We will encourage personal growth and development • We will care for one another especially the most frail and vulnerable • We will be open and fair in all our dealings

4. Where they can feel safe and secure Creating a Spiritual Environment Where they are loved and cared for Where they feel comfortable and where they feel free to be themselves Where they have a sense of belonging

5. Chaplain • History of voluntary chaplains • Support needs changed - now paid post • ‘to be the focus of spiritual care in the home/scheme’ • Staff training and support

6. Dementia • In a strange land • Dead or alive? • Social malignancy / social death

7. Confusion from pleasantly muddled to return to chaos

8. The Narrative of Dementia • An ancient Egyptian script says... ’oldness has come… the heart is forgetful and cannot recall yesterday’ • Blanchard’s ‘Physical Dictionary’ of 1726… ‘the extinction of the imagination and judgement’ • C18th ‘demens’… ‘a state of psychological incompetence regardless of age, reversibility or pathological antecedents’

9. 1990’s … ‘a generic term to describe a progressive deterioration in mental powers accompanied by changes in behaviour and personality’ • National Audit Office 2007… ‘a range of progressive terminal organic brain diseases…caused by structural and chemical changes in the brain’

10. In 1970 the opinion was that… ‘Alzheimer’s disease is statistically infrequent and of relatively little interest to students of psychopathology’ It was seen as disease of the lower socio-economic strata of society, ‘their unfortunate circumstances intensify the feelings of apathy and hopelessness brought on by the disease.’ (Bromley ‘The Psychology of human ageing’ 1974) • And now?...

11. Ways to Explain Dementia • Near-uniform agreement of an organic disease model for dementia that has consequences for our understanding that nothing can be done Could there be other ways of understanding it? e.g. some perspectives from the social sciences • Dementia as disability • Dementia as deviance • Dementia as brain damage • Dementia as loss • Dementia as trauma

12. Dementia and social death • Malignant social psychology: (Tom Kitwood) disempowerment, infantalization, intimidation, labelling, stigmatization, invalidation, banishment, objectification, ignoring, imposing, withholding, accusation, disruption, mockery, disparagement

13. Old culture of care • People with dementia seen as problems • Minimal warehousing: people with dementia as objects • Drugs to control behaviour

14. New culture of care • See the person not the problem • They are people like us • Their well-being is important • They have spiritual needs

15. Person-centred care This is based on authentic contact and communication: Respect ‘a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust’ (Kitwood 1997:8)

17. Respect comes from ‘re spectare’ – to see again to see : to notice to realise to wonder… Matthew 25: ‘When did I see you…’

18. ‘Having Alzheimer’s disease made me face ultimate realities, not my bank account. My money, my job, and other parts of my life were trivial issues that restricted my growth, my spiritual growth. Alzheimer’s disease transferred me from what I call the trivial plane to the spiritual or personal plane. I had to face the absolute horror of the ‘A’ word, and I began a dialogue with my existence, a dialogue with my life and my death.’ Lisa Snyder

19. Stages along the way • early stage: loss of short term memory, confusion, • middle stage: more support needed with daily living • end stage: increasing physical frailty

20. ‘Therapies’ • Reality orientation • Reminiscence • Validation • Music • ‘Pictures to Share’

21. Making meaning • Be in the present moment be open and with ‘loving attention’ • Learn the dreams ‘seize the day’/’magic moments’ when the feeling remains • Build on life history work the Memory Box • Use of senses to access memory and feelings • Cue in signs, symbols and rituals

23. Things to remember • What assumptions we make • Feelings and emotions are not lost • Visits do matter • Eye contact is vital • Take time

24. margaret.goodall@mha.org.uk