Post on 07-Nov-2014
description
How can we help people with dementia and their families when they are
bereaved?
Jenny Henderson Development Manager Alzheimer Scotland
Everyone is a house with four rooms, a physical, a mental, an emotional and a spiritual room. Most of us tend to live in one room most of the time, but unless we go into every room, every day, even if only to keep it aired, we are not a complete person. A House with 4 rooms by Rummer Godden 1948
Grief and dementia
• What is dementia
• How does loss and bereavement affect families and friends?
• How does loss and bereavement affect people with dementia and what can we do about it
The Dementia Epidemic in Scotland
2013
86,000 people have
dementia
2036
164,000 people
will have dementia
ADI (2010;2012)
Symptoms of dementia – early signs forgetting appointments losing things more than usual difficulty with familiar names or with
words problems handling money difficulties with work problems with driving feeling unsure in familiar places lack of confidence/feeling low poor concentration
Symptoms – later stages frequently confused may not recognise even close
family members will probably need a great deal
of help with everyday tasks and activities (eating, washing, going to the toilet)
may have difficulty speaking to other people or understanding what is said to them
Relationships Environment
The person you are
Life experiencesCoping Physical
Psychological health
Brain changes
The impact of grief on dementia has been
described as
‘The constant yet hidden companion of Alzheimer's and other dementias’ (Kenneth J Doka)
The literature search: specific to bereavement and dementia
anticipatory grief for carers of people with dementia (Dempsey M, Baago S 1998)
disenfranchised grief when a ‘person is left to carry their burden alone’ (Hughes et al 2010)
significant losses and the changes that occur because of those losses may even exacerbate dementia (Rando 1993)
A wider literature search on bereavement :-
describe the need for the bereaved to engage with their loss and work through it
All models outline the extreme emotional and behavioural experiences which are part of normal grief in a cognitively intact person
Grief is an intensely personal experience
What bereavement experiences do families
experience?Disenfranchised loss
‘Losses that are not supported by others’‘Left to carry their own painful burden alone’No ‘right’ to mourn
Kenneth J Doka
Anticipatory loss
Ambiguous loss- an on going process
1. Anticipatory loss2. Progressive loss3. Acknowledged loss
Boss, P, Ambiguous loss, learning to live with unresolved grief. Cambridge ,MA Harvard University Press. 1990
Acceptance Avoidance
How do people with dementia cope with loss grief and bereavement?
Daughter struggles to cope not only with her own loss of her Dad but also the inconsolable grief experienced by her mother who has dementia. She forgets that her husband is dead and cannot understand where he is – each time she is told it is as if it is the first time…
The experiences of loss and bereavement for people with dementia
Past losses become confused with present losses and are relived
A current loss may be confused with a past loss
The loss may be in real time
Expression of grief will be affected by a variety of factors:- The individual
relationship The amount of
contact they have had with the person
The degree of the dementia
Expression of grief
Each person is an individual
Agitation and restlessness Distress Fear Anger Suspicion Concern Sense of things not being quite right Someone close is missing Confuse past losses with present ones
The challenges for the person with dementia
The mourning process may be experienced by people with advanced dementia but they may no longer have the cognitive skills to resolve or make sense of it.
Loss of cognition must not be confused with loss of emotion
Disenfranchised grief? Mrs P has dementia. Her daughter’s
husband Allan dies suddenly the family make a decision not to tell her – she does not go to the funeral. Mrs P makes no reference to Allan and appears unaware of his death
Three months later she is ill in hospital and asks her daughter where Allan is, the daughter makes an excuse Mrs P announces Allan is dead isn’t he?
Taking comfort from each other
Mr A has dementia he is looked after by his wife their son tragically dies whilst playing squash – leaving behind a wife and young family.
Mrs A receives the news by phone she tells Mr A although he cannot understand what has happened he recognises his wife’s distress they spend the night comforting each other
The foundations of good practice
Person centred care
Telling the truth?
Reminiscence work
Practical tips How to tell the person Consider the time of
day Giving the person a
role in the funeral Attending the funeral Coping after the
funeral Tuning in to the
emotions Answering awkward
questions Using the past tense
Be responsive to the moment
Be consistent
Be patient
Take time to address your own feelings
Be honest
Finally Regardless of the
model ‘being with’ and spending time, listening to stories and acknowledging feelings is vitally important to help a person through grief
Conclusions The pain and loss cannot be
underestimated The person with dementia’s grief is
an additional burden for relatives struggling to cope with their own grief
Grief is a unique experience Families will require practical and
emotional support
A a web based resource :-
www.alscot.org
A leaflet A training
resource
Coping with loss is never easy, but I hope that this talk will raise awareness of the difficulties people with dementia and their families face when coping with loss and how we can help them to find a calm and safe place.