Jenny Henderson - Grief and dementia

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Jenny Henderson - Grief and dementia

Text of Jenny Henderson - Grief and dementia

  • 1. How can we help people with dementia and their families when they are bereaved? Jenny Henderson Development Manager Alzheimer Scotland
  • 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. 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. The Dementia Epidemic in Scotland 2013 86,000 people have dementia 2036 164,000 people will have dementia
  • 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. 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. Environment The person you are Life experiences Coping Physical Psychological health Brain changes
  • 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Disenfranchised grief? Mrs P has dementia. Her daughters 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 isnt he?
  • 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 wifes distress they spend the night comforting each other
  • 20. The foundations of good practice Person centred care Telling the truth? Reminiscence work
  • 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. Be responsive to the moment Be consistent Be patient Take time to address your own feelings Be honest
  • 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. Conclusions The pain and loss cannot be underestimated The person with dementias 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. A a web based resource :- www.alscot. org A leaflet A training resource
  • 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.