This document discusses how people with dementia and their families cope with bereavement and loss. It notes that grief can be a disenfranchised or ambiguous experience for those with dementia as they may forget losses or confuse past and present. Expressions of grief in dementia can include agitation, distress, or confusion about a missing person. It emphasizes the importance of person-centered care, reminiscence work, honesty and consistency when supporting those grieving with 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

7. 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

8. 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

9. Environment
The person
you are
Life experiences
Coping
Physical
Psychological health
Brain changes

11. The impact of grief on
dementia has been
described as
‘The constant yet hidden
companion of Alzheimer's and
other dementias’ (Kenneth J Doka)

12. 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)

13. 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

14. 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

15. 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

16. 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…

17. 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

18. 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

19. 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

20. 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

21. 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?

22. 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

23. The foundations of good
practice
Person
centred care
Telling the
truth?
Reminiscence
work

24. 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

25. Be responsive to the
moment
Be consistent
Be patient
Take time to address
your own feelings
Be honest

26. 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

27. 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

28.  A a web
based
resource :-
www.alscot.
org
 A leaflet
 A training
resource

29. 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.