Resources: Living with Dementia

To see the recorded talks from the online conference on 24th June 2021, click here

Spiritual and Pastoral Care of those with Dementia: The Revd Deacon Corinne Smith, Former Hospital and Hospice Chaplain for Older People's Medicine

SETTING THE SCENE
  • Well over half a million people in UK have dementia – a bit more than 1% of population.
    Most are over 80, but dementia can start in middle age and is not a natural consequence of getting old.  
  • The term “Dementia” is used to cover a rage of organic brain diseases. The most common are Alzheimers and Vascular dementia.  
  • Different dementia illnesses affect the brain in different ways, but in all cases it causes progressive deterioration of the brain and behavioural changes.  
  • There is no cure for dementia, although drugs can slow progress.  
  • People can feel embarrassed when they are first diagnosed, and it can be a very isolating time for them and those closest to them.  
  • There is a great need for support and understanding; and churches can have a key part to play in providing that support for people with dementia and their carers.  
  • As the illness progresses, communication becomes more difficult and, as it takes its course, people with dementia can find themselves stripped of their personhood, both by their illness and by the attitude of those around them.  
The challenge to our churches
  • How do we encourage people to live hopefully in the face of such sadness? How can we give help and support to both the person with dementia and their carers, so that our churches can be places of hospitality and acceptance to enable this to be a time of growth and fruitfulness?
 WHAT ARE SPIRITUAL NEEDS?

  • Spiritual needs, or “needs of the human spirit” involve all the things that give our lives meaning, value, purpose, identity, and include our relationships with other people and with God.
  • For people with dementia it is particularly important that their personhood and identity is respected and affirmed.  Sometimes it can be hard to ”unlock” behaviour.  
  • We are all on a continuum between spiritual ill-being at one end and well-being at the other. Spiritual needs are the same for people with dementia as for those who don’t have it; but we may need to be more intentional in our pastoral care of people with dementia, because they find it more difficult to express them.  
  • Well-being for a person with dementia is about giving them a sense that they are “kept” and “held” and are safely anchored in the ordinary things of life eg flowers, music, the environment.
 
Life can be made meaningful by addressing 3 types of values (Viktor Frankl) Creative, Experiential and attitudinal.
1. Creative – eg baking, gardening, painting etc  
2. Experiential –
  • things that express the love of another person, a pet (stuffed toy/ doll)
  • music art, poetry
  • Nature
​3. Attitudinal –
  • these are about the person’s attitude to life, and nearly always implies some sort of faith system.
  • For those with no religious belief we must discover resources which have sustained them in the past.
  • Holy Communion. People remember the Lord’s Prayer and know when to open their mouths for HC.
 Importance of ritual
Can be both religious and non-religious eg birthdays/ New Year
  • They give us an opportunity to express our deepest memories and brings the past into the present.
  • They are reminders of who we are and offer a sense of belonging/ identity as individuals and as members of a community.
  • Very important in times of sorrow or loss.
  • Rituals are often carried out as a group activity, so they promote companionship and sense of connectedness.
  • Repetition is important. Provides comfort and security.
  • Simple liturgy. Traditional words.
  • Maybe have abide with me at the beginning and end of a service.
  • Singing can still be possible when speech isn’t.
 PRACTICAL TIPS
Say who you are
“Hello, I’m Sue the pastoral visitor. It’s Wednesday today. That’s the day I come and visit here”.
 Memory cueing – Know as much as you can about the person. What cues might work. Sounds. Smells. Rosemary from the garden. Model cars. Railway magazines etc
Remember your purpose in visiting. Relationship-building.
  • If you don’t understand, say so.
  • Keep your promises.
  • Don’t assume “she won’t remember”.
  • Be honest.
  • People are often more confused in the afternoons.
  • Stand or kneel in front of the person – don’t approach from behind
  • Use simple sentences, relying mostly on nouns.
  • Speak slowly and clearly – be aware of any sensory deficits (sight/ hearing)
  • Wait for a response – listen with respect
  • Respect the need for privacy, dignity
  • Regularity and constancy
  • Be alert to signs of distress
  • Affirm feelings “I want my mother”. What are the feelings which are being expressed? Loneliness/ fear.
  • Foster a sense of identity – learn about the person’s past
  • Physical contact – when you leave don’t leave the person on their own. Give them something to hold or someone to sit near.
  • If you say you’ll come again, do so!
  • People are more confused in the afternoon
 
CONCLUSION
Christians believe that we are all made in the image of God. This means, no matter how distorted or marred that image might become as a result of illness, age or infirmity, every single person is unique and precious to God.
 Isaiah 43:1 “I have called you by name, you are mine”.
 As well as this, don’t ever assume that because someone is non-verbal, that God isn’t still at work in that person. Always be aware of the capacity for growth.

Faith in Older People: Enabling a better understanding of the importance of the spiritual dimension to the well-being of older people
​Maureen O'Neill, Director FiOP

Click on image above to access the FiOP website and the title below to access the article.
​One Step at a Time
​A learning resource for Faith Communities

Recommended Websites:  Zena Aldridge, ​Research Fellow, Dementia UK, Hon. Lecturer University of East Anglia, Admiral Nurse

Click on the images below to access the websites

Admiral Nurse Dementia Helpline

Admiral Nurses are specialist nurses that support families affected by dementia. Call our Dementia Helpline for free on 0800 888 6678, send an email to 
 helpline@dementiauk.org 
​9am –9pm Mon- Fri : 9am – 5pm weekends

Dementia UK

Lots of useful information and advice

Alzheimer's Society


Alzheimer's Society
Dementia Connect Helpline

0333 150 3456

Recommended Books

  • ​Title             Ageing, Spirituality and Well-Being
  • Author         Albert Jewell
  • Publisher    Jessica Kingsley
​
  • ​Title             A Guide to the Spiritual Dimension of Care for People with Alzheimer’s Disease and Related Dementias
  • Author         Eileen Shamy
  • Publisher    Jessica Kingsley
​
  • ​Title                God in Fragments – Worshipping with Those Living with Dementia
  • Authors        Matthew Salisbury, Robert Atwell, Julia Burton-Jones
  • Publisher    Church House Publishers
 
  • Title              What Happens To Faith When Christians Get Dementia
  •  Author        Tricia Williams
  • Publisher    Pickwick