How can we help people
with dementia and their
families when they are
bereaved?
Jenny Henderson
Development Manager Alzhei...
Everyone is a house with four rooms, a
physical, a mental, an emotional and a
spiritual room. Most of us tend to live in o...
Grief and dementia
• What is dementia
• How does loss and bereavement affect
families and friends?
• How does loss and ber...
The Dementia Epidemic in
Scotland
2013
86,000
people
have
dementia
2036
164,000
people
will have
dementia
Symptoms of dementia –
early signs
 forgetting appointments
 losing things more than usual
 difficulty with familiar na...
Symptoms – later stages
 frequently confused
 may not recognise even close
family members
 will probably need a great d...
Environment
The person
you are
Life experiences
Coping
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 dementia...
The literature search:
specific to bereavement and
dementia
 anticipatory grief for carers of people with
dementia (Demps...
A wider literature search on
bereavement :-
 describe the need for the bereaved to
engage with their loss and work
throug...
What bereavement
experiences do families
experience?
Disenfranchised loss
‘Losses that are not supported by
others’
‘Left ...
Anticipatory loss
Ambiguous loss- an on going process
1. Anticipatory loss
2. Progressive loss
3. Acknowledged loss
Boss, ...
How do people with dementia cope
with loss grief and bereavement?
Daughter struggles to cope not only with
her own loss of...
The experiences of loss and
bereavement for people with
dementia
 Past losses become confused with
present losses and are...
Expression of grief will be
affected by a variety of
factors:-
 The individual
relationship
 The amount of
contact they
...
Expression of grief
Each person is an individual
 Agitation and restlessness
 Distress
 Fear
 Anger
 Suspicion
 Conc...
The challenges for the
person with dementia
The mourning process may
be experienced by people
with advanced dementia but
t...
Disenfranchised grief?
 Mrs P has dementia. Her daughter’s
husband Allan dies suddenly the family
make a decision not to ...
Taking comfort from each
other
 Mr A has dementia he is looked after by
his wife their son tragically dies whilst
playing...
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 t...
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 vital...
Conclusions
 The pain and loss cannot be
underestimated
 The person with dementia’s grief is
an additional burden for re...
 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 an...
Jenny Henderson - How can we help people with dementia and their families when they are bereaved?
Jenny Henderson - How can we help people with dementia and their families when they are bereaved?
Jenny Henderson - How can we help people with dementia and their families when they are bereaved?
Jenny Henderson - How can we help people with dementia and their families when they are bereaved?
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Jenny Henderson - How can we help people with dementia and their families when they are bereaved?

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  • Today is talking about reliance and spiritual needs – bereavement is one of the times we all have to face in our lives and ‘what rooms’ we manage to live in at those times is an indication of how we will cope with loss and bereavement. For people with dementia and their families these times can be catastrophic and bring into sharp focus such things as truth telling and exceptionally difficult ethical decisions have to be made
  • as ‘what do I say when Jim asks about his wife when I know she died many years ago’? Or ‘How do we help Betty to accept that her husband is dead? – he was her main carer, she is distraught without him and however many times we tell her she is unable to take it in’Or Betty who has cared for her husband for several years and continually is upset and crying 
  • Both for people with dementia and their families. There is information and research about anticipatory grief and dementia available for family carers but a paucity of information about grief and how people with dementia cope with loss. – and I guess this statement is true for everybody as the dementia begins it can mean a loss of a way of life doing the ordinary things which we enjoy families no longer being able to share things together etc
  •  The literature search The literature search highlighted how little specific information or research was available on this topic. The main source of information was obtained from the work of Dr Kenneth J Doka who has written extensively on grief and bereavement. Much of his work, as well as others are related to the well-researched and recognised anticipatory grief experienced by informal carers of people with dementia. This type of grief is experienced when the family member anticipates the death or loss of the person before it actually occurs. Doka has also recognised the difficulties that loss and bereavement may cause for a person with dementia and describes grief ‘as the hidden companion of Alzheimer’s and other dementias,’ and he gives general advice as to how to help someone with dementia who is bereaved. Perhaps the most helpful work that gives us an understanding of the bereavement experienced by people with dementia is the concept of disenfranchised grief; this ‘refers to losses that are not supported by others. In effect the person has no right to mourn.’ Doka, whilst not specifically talking about people with dementia describes this type of grief as one in which the person ‘is left to carry their own painful burden alone.’ This has some resonance with people with dementia, who because of our lack of understanding may not have the opportunity to have their grief acknowledged or the opportunity to work through their grief. In addition Rando has suggested that significant losses and the changes that occur because of the losses may even exacerbate the dementia. Dempsey, M. Baago, S. Latent grief: The unique and hidden grief of carers of loved ones with dementia, American Journal of Alzheimer’s and other dementias ,March/April vol 13 page 84 -91 1998 Hughes, J.C. Lloyd Williams, M. Sachs, G.A. Supportive care for the person with dementia, Page209,Oxford Press, 2010.http://www.hospicefoundation.org/uploads/doka5.pdf Jan 2012.Rando, T. Treatment of complicated mourning, Champaign IL, Research Press,1993.
  • It may be impossible for the person with dementia to achieve thisIt is important to reflect on what happens to the cognitively intact person and how the person with dementia may express the same emotions and behaviours
  • Is this something our society encourages how many times do you hear things ‘like you must be relieved he was such a burden’ ‘ he had a good innings when all time the person wants to shout he was my father or my partner and it doesn’t matter how old or sick he was to the person he was a significant person who will be missedOur society does not like mourning – recovery from death is supposed to be quick but in reality it may take a very long time And when we come on to talking about bereavement and people with dementia you will see the idea of disenfranchised loss is also releventMany families will experience the effects of grief and mourning before the person dies. Understanding these psychological challenges is imperative to family involvement and the support needs of the families. Doka has written extensively on grief and bereavement and describes grief families experience ‘as the hidden companion of Alzheimer’s and other dementias.’ Doka recognised the difficulties loss and bereavement may cause family members and friends before the person dies and refers to ‘losses that are not supported by others and ‘is left to carry their own painful burden alone.’ He describes this type of grief as disenfranchised grief. In effect the person has no ‘right’ to mourn. Doka and others also explore another aspect of grief experienced by informal carers of people with dementia and this is known as anticipatory grief. This type of grief is experienced when the family member anticipates the death or loss of the person before it actually occurs. Anticipatory grief was first described by Erich Linderman in 1944 and was further defined by Rando. The losses associated with anticipatory grief have been defined by Boss as ambiguous loss – an unclear loss when the person is missing either physically or psychologically. Ambiguous loss is an on-going process with three phases:- Phase 1 Anticipatory loss: describes losses which maybe expected to be felt as the illness advancesPhase 2 Progressive loss: in this phase the family members experience psychosocial loss feeling pain and distress as they watch the deterioration of the person with dementiaPhase 3 Acknowledged loss: this usually occurs in the later stages of the illness and takes two routes;a) Acceptance this has been described by Dupuis as the family member accepts the changes that have occurred in the person and the person is not what they used to be and deals with the situation as it is. b) Avoidance – the family member knows the loss has occurred but does not accept it avoiding dealing with the full reality and the impact on family dynamics and relationships. How families cope with their own losses will influence how they support their family member with dementia.http://www.scribd.com/doc/3785950/Grief-and-DementiaLindemann, E. Symptomatology and Management of Acute Grief. American Journal of Psychiatry 101 :142–148.1944.Read more: http://www.deathreference.com/Gi-Ho/Grief.html#ixzz2XXuKq5ExRando, TA. A comprehensive analysis of anticipatory grief: perspectives, processes, promises, and promises, in Rando, TA (ed), Loss and anticipatory grief,pp.3-37. Washington, DC: Lexington Books. 1986.Boss, P, Ambiguous loss, learning to live with unresolved grief. Cambridge ,MA Harvard University Press. 1990Dupuis, SL Understanding ambiguous loss in the context of dementia: adult children’s perspective. J Gerontol Soc Work,37(2),93-115. 2002.Boss, P. Ambiguous loss, learning to live with unresolved grief. Cambridge ,MA Harvard University Press. 1990
  • Doka and others also explore another aspect of grief experienced by informal carers of people with dementia and this is known as anticipatory grief. This type of grief is experienced when the family member anticipates the death or loss of the person before it actually occurs. Anticipatory grief was first described by Erich Linderman in 1944 and was further defined by Rando. The losses associated with anticipatory grief have been defined by Boss as ambiguous loss – an unclear loss when the person is missing either physically or psychologically. Ambiguous loss is an on-going process with three phases:- Phase 1 Anticipatory loss: describes losses which maybe expected to be felt as the illness advancesPhase 2 Progressive loss: in this phase the family members experience psychosocial loss feeling pain and distress as they watch the deterioration of the person with dementiaPhase 3 Acknowledged loss: this usually occurs in the later stages of the illness and takes two routes;a) Acceptance this has been described by Dupuis as the family member accepts the changes that have occurred in the person and the person is not what they used to be and deals with the situation as it is. b) Avoidance – the family member knows the loss has occurred but does not accept it avoiding dealing with the full reality and the impact on family dynamics and relationships. How families cope with their own losses will influence how they support their family member with dementia.
  • What about distraction? Trying to find the underlying emotion
  • Jenny Henderson - How can we help people with dementia and their families when they are bereaved?

    1. 1. How can we help people with dementia and their families when they are bereaved? Jenny Henderson Development Manager Alzheimer Scotland
    2. 2. 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
    3. 3. 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
    4. 4. The Dementia Epidemic in Scotland 2013 86,000 people have dementia 2036 164,000 people will have dementia
    5. 5. 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
    6. 6. 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
    7. 7. Environment The person you are Life experiences Coping Physical Psychological health Brain changes
    8. 8. The impact of grief on dementia has been described as ‘The constant yet hidden companion of Alzheimer's and other dementias’ (Kenneth J Doka)
    9. 9. 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)
    10. 10. 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
    11. 11. 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
    12. 12. Anticipatory loss Ambiguous loss- an on going process 1. Anticipatory loss 2. Progressive loss 3. Acknowledged loss Boss, P, Ambiguous loss, learning to live with unresolved grief. Cambridge ,MA Harvard University Press. 1990 Acceptance Avoidance
    13. 13. 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…
    14. 14. 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
    15. 15. 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
    16. 16. 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
    17. 17. 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
    18. 18. 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?
    19. 19. 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
    20. 20. The foundations of good practice Person centred care Telling the truth? Reminiscence work
    21. 21. 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
    22. 22. Be responsive to the moment Be consistent Be patient Take time to address your own feelings Be honest
    23. 23. 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
    24. 24. 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
    25. 25.  A a web based resource :- www.alscot. org  A leaflet  A training resource
    26. 26. 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.

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