Dementia Seminar by the Pilgrim's Friend Society

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Pilgrims’ Friend Society:

Pilgrims’ Friend Society Insights into Dementia

Mind and Soul Dementia: losing your mind doesn’t mean losing your soul :

Mind and Soul Dementia: losing your mind doesn’t mean losing your soul

Our Background :

Our Background In 1807 the Aged Pilgrims’ Friend Society was founded, on the basis of Galatians 6:10 In the 1970s it became ‘Pilgrim Homes’. (The Pilgrims...) In 2010 the Pilgrims’ Friend Society was formed, incorporating Pilgrim Homes, Ernest Luff Homes and the Redbourn Missionary Trust. Mind and Soul and Dementia Page 3

Introduction:

Introduction Louise Morse, Media and Communications Manager; Cognitive Behavioural Therapist, author . Mind and Soul and Dementia Page 4

Our background :

Our background From 2003, more people with dementia in our homes Led to training and three books: - Mind and Soul and Dementia Page 5

Matthew 25:40 :

Matthew 25:40 Mind and Soul and Dementia Page 6 "The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me’”.

How to help dementia sufferers :

How to help dementia sufferers When caregiving When befriending When visiting Remembering in church In practical ways In being there ... Encouraging, with spiritual words and songs. Mind and Soul and Dementia Page 7

DEMENTIA – we’re looking at - :

DEMENTIA – we’re looking at - What it is How to cope with it What individuals/families can do What the church can do Can we avoid it? What’s available to help Sources of information Mind and Soul and Dementia Page 8

Most dreaded :

Most dreaded Holds the place that cancer did 40 years ago Survey in 2008 showed many GPs preferred not to give diagnosis No cure on horizon – June 2010 pharma firms met to share failed drug trials Some medication can hold back the progression Mind and Soul and Dementia Page 9

Feedback, including from survey to churches :

Feedback, including from survey to churches Mind and Soul and Dementia Page 10

Important questions :

Important questions What exactly is dementia? When to seek help, and from whom? Control of finances and Power of Attorney HOW TO HELP! Challenging behaviour Prevention – and genetics? When is residential care indicated? How can a church fellowship help? Mind and Soul and Dementia Page 11

What is dementia, exactly?:

What is dementia, exactly? Dementia is an umbrella term that refers to the condition/syndrome that results from organic/neurological damage to the brain, caused by stroke (vascular) Alzheimer's disease, head trauma, metabolic disorders, Lewy Body, Pick’s Disease, chronic alcoholism, or other ... Including from the stresses of a ‘malign social psychology’? (Kitwood, Dementia Reconsidered.) Mind and Soul and Dementia Page 12

Rementing, or spontaneous remissions:

Rementing, or spontaneous remissions Clear examples of a measurable recovery, for a short time, of powers that had apparently been lost. (Kitwood, Thorpe 1996) If spontaneous intermittent remissions occur, the implication is that even a brain which is carrying severe pathology may have more reserve and flexibility than is commonly assured. (Kitwood). Mind and Soul and Dementia Page 13

Dementia :

Dementia It is progressive It can be delayed, but not cured Causes are not known Genes are not as important as ‘gene expression’ Much advice on prevention; the best is similar to that for vascular health Mind and Soul and Dementia Page 14

Statistics :

Statistics Figures of 820,000 in the UK Many people not diagnosed By 2025, one in three of us will be affected by dementia – as a caregiver, friend or family member, or sufferer Only a quarter of caregivers in the UK in care or nursing homes. Most cared for by relatives – usually an elderly spouse. Mind and Soul and Dementia Page 15

Could it be dementia?:

Could it be dementia? Not an inevitable part of ageing. Signs are not only memory loss. Disorientation/sense of dislocation Not able to make decisions Not looking after oneself Hygiene Apathy Depression Mind and Soul and Dementia Page 16

Diagnosis :

Diagnosis There are conditions that can cause dementia like symptoms but can be treated – depression, chest and urinary infections, anaemia, severe constipation, vitamin and thyroid deficiencies and brain tumours poor sight or hearing; emotional changes and upsets, such as moving or bereavement; or the side-effects of certain drugs or combinations of drugs tests are the MMSE and the Addenbrooke’s test. Mind and Soul and Dementia Page 17

Sample questions :

Sample questions Test Your Memory sample questions Who is the Prime Minister? Why is a carrot like a potato? Why is a lion like a wolf? Draw the hands so the time reads 9:20 on this clock In what year did WW1 start? Please list four creatures beginning with 'S' eg . shark Sums: 20-4=   16+17=     8X6=   4+15-17= Mind and Soul and Dementia Page 18

Sample MMSE questions:

Sample MMSE questions Three objects named: apple, table, penny. Patient must repeat and remember later What are these? (a pencil and a watch) Spell "WORLD" backwards Patient to copy a picture of pair of intersecting pentagons Follow a three stage command: Place index finger of right hand on your nose and then on your left ear Mind and Soul and Dementia Page 19

The answers! :

The answers! David Cameron. Both are vegetables. Both are animals/hunters. 1914. Any creature or breed of dog is fine. Mythical creatures not allowed. 6, 33, 48, 2 Mind and Soul and Dementia Page 20

After the diagnosis:

After the diagnosis Life expectancy? Depends on age at diagnosis – average AD 3 – 15 years. Stages of illness? Roughly, three – early, moderate, severe. Progression different with each person Is it possible to have ‘Contented Dementia’? Mind and Soul and Dementia Page 21

Things to remember :

Things to remember Focus on the person, not the dementia The person doesn’t change although they may appear to Focus on the person’s core beliefs, on their values, on their significant events. Look beneath their communications for the meaning Mind and Soul and Dementia Page 22

Getting on with life. :

Getting on with life. A range of different reactions Some patients remain unaware Telling others Planning ahead Coping strategies Helps available varies throughout the country Mind and Soul and Dementia Page 23

The importance of relationships:

The importance of relationships Avoiding isolation - not being abandoned Letting church family know your needs Building life story books Get information Being prepared for the future Anticipating/understanding your feelings Mind and Soul and Dementia Page 24

The importance of emotions in dementia :

The importance of emotions in dementia Dementia sufferers can have heightened emotions As cognitive ability diminishes, emotions become highlighted. EG – may forget who you are, but remembers how he or she feels about you. Look for the emotion underneath the statement or question Mind and Soul and Dementia Page 25

The importance of emotions for caregivers :

The importance of emotions for caregivers Negative emotions drain energy Negative emotions blur understanding ‘Malign biochemical environment’ damaging to neurones ... changes the anatomy of the brain Create unreasonable expectations Caregiver’s perceptions affect the way they cope. Mind and Soul and Dementia Page 26

Problem behaviours :

Problem behaviours ‘All so called problem behaviours should be viewed, primary, as attempts at communication, related to need. It is necessary to seek to understand the message, and so to engage with the need that is not being met.’ Mind and Soul and Dementia Page 27

Caregiving – the Atlas syndrome:

Caregiving – the Atlas syndrome The importance of getting the right sort of help. EG: Not someone doing the housework – someone being there. Consider respite care. For caregiver as well as sufferer. Dementia is a physical illness. Residential care is often as essential as hospital care. Mind and Soul and Dementia Page 28

Recognising limitations :

Recognising limitations Studies emphasize that health care providers recognise the point at which residential care is necessary for the well-being of caregiving families. Caregivers continue to ‘care’, but the caregiver burden is greatly lifted. Sufferers benefit from trained teams of carers, who are also trained to care for themselves. Mind and Soul and Dementia Page 29

Choosing a care home :

Choosing a care home At the outset, most spouses prefer not to consider residential care But most experts recommend it at the right time. Caregivers continue to care, but the burden is lifted somewhat. Other emotions to deal with Mind and Soul and Dementia Page 30

The care home :

The care home Is the home fresh and does it smell clean? Do residents look well cared for? Do staff have time for residents? Can you visit at any (reasonable) time? View the report on the CQC website How ‘people centred’ is the manager? Mind and Soul and Dementia Page 31

Pilgrimage through dementia:

Pilgrimage through dementia ‘I believe that people with dementia are making an important journey from cognition, through emotion, into spirit. I’ve begun to realise what really remains through this journey is what is really important. I think that if society could appreciate this, then people with dementia would be treasured and accepted. ‘ Christine Bryden, high achieving executive diagnosed with dementia. Mind and Soul and Dementia Page 32

An overview :

An overview We are people on pilgrimage Each one of us is an eternal being Our lives are short, in the light of eternity Mind and Soul and Dementia Page Year 1 D. comes here. Heaven forever 33

Our tents... our temples.:

Our tents... our temples. Mind and Soul and Dementia Page Walls – externals. Gatehouses – senses Outer court – cognition/mind Inner court - soul, psyche Holy place – the place made for God/Holy Spirit 34

Not good if detached:

Not good if detached Jimmie – the lost soul Worship – that pulls us together An ‘organic continuity and unity Mind and Soul and Dementia Page 35

The ultimate conclusion:

The ultimate conclusion But as it is written: “ Eye has not seen, nor ear heard, Nor have entered into the heart of man The things which God has prepared for those who love Him. Mind and Soul and Dementia Page 36

Contacts:

Contacts www.pilgrimsfriend.org.uk info@pilgrimsfriend.org.uk Louise.morse@pilgrimsfriend.org.uk 0300 303 1400 Mind and Soul and Dementia Page 37

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