WHERE HAS HE GONE? GRIEF AND LOSS IN DEMENTIA. Di Moncrieff Dr Thomas Dellmann

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1 WHERE HAS HE GONE? GRIEF AND LOSS IN DEMENTIA Di Moncrieff Dr Thomas Dellmann

2 The dark clouds of disease can cover up the essence of the person.

3 1 in 10 people would avoid spending time with a person with dementia 2012 survey. Isolation & grief: the social impact of dementia

4 Why is it so difficult for us to look at him

5 I will be like him

6 I want you to see me as a whole person, not as a disease. Sometimes I feel more like an object or a disease than a human being

7 Even if he doesn t even know who I am. I know who he is

8 What are the losses for a person with dementia?

9 Loss and Grief Hopes and plans for the future Abilities, skills and independence Uncertainty about how disease will progress Relationships and roles Fear about the future

10 Loss and grief Isolation as environment becomes more unfamiliar and confusing Living with feelings that things are not right but unable to identify what is wrong Somewhat aware of their confusion Loss of memories and understanding

11 Behavioural and psychological symptoms intensified by lack of meaningful engagement Isolation, loss of responsibility and autonomy leads to deterioration in dementia Dear Life On caring for the elderly. Karen Hitchcock

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14 Losses Dual death: 1. Social 2. Physical Gradual process of loss: the long good-bye Ambivalent, unacknowledged loss (depression) Support from person with dementia Attachment security Companionship / intimacy Role as spouse / lover Control Freedom

15 What affects grieving in dementia carers? Increasing grief Higher care burden Resource depletion Guilt, sense of failure Less satisfaction with care Decreasing grief Carer relief after death Acknowledged grief in the caring period Caring benefit Depression and poor emotional health Dependency on Spouse Expectation and preparation for death Consistent support before and after death Religious attendance

16 Stages of grieving Adult child carer Initial stage Low grief Denial Moderate dementia High grief Loss of self Depression Anger / frustration about caregiving Non-acceptance as part of relationship Severe dementia Post death Moderate grief Loss of parent Residential care Relief Mellower Philosophical Grief mild to moderate Guilt Relief for self Relief for patient Back to normal Spouse carer Low grief Full understanding Sadness Empathy Moderate grief Gradual loss of partner Sadness Caregiving accepted as part of relationship with dignity and affection High grief Loss of partner Loss of caring role Depression Anger caregiving Residential care Some relief Guilt, failure Grief mild to severe Relief for self Relief for patient Loss Final Rebuilding new identity

17 Caregivers support during caring phase Enquire about how they are going Enquire about losses Validate and normalize losses and other emotions (anger, guilt, fear, & carer (dis)stress Affirm the strengths and resilience you see in carer

18 Caregivers support during caring phase Spouse Moderate stage: Reframing grief into strengths-based caring Support group Carer mentoring Adult children Early stage: Confront adult-child caregivers with accurate information when in denial Severe stage Individuality concerns e.g., how to live alone Family leisure programs Moderate stage: Anger management Practical support (e.g. care packages)

19 Grief and Bereavement Ambiguous Loss Paradoxical Thinking Disenfranchised Grief Diagnosis Person with dementia Family Illness Progression Admission to RACF Death Family Family Person with dementia Family Family Family Person with dementia Family Family Bereavement Person with dementia

20 Bereavement person with dementia Person with advanced dementia can experience grief when loved one dies May not be able to remember name of deceased but can still feel loss and grief

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23 Response to Loss Model Attachment theory Overwhelmed Resilient Anxious Ambivalent Secure Controlled Avoidant Stress theory Intrusion Avoidant Dual process model Loss orientation Oscillation Restoration Orientation Grieving styles Intuitive - emotional coping Blended - emotional and cognitive coping Instrumental Cognitive coping

24 Personal resources Bereavement risk for family members Pre-death distress Relationship with deceased Family functioning Support network Previous losses

25 Normal / uncomplicated grief Variation in intensity and duration Painful and disruptive Able to maintain daily function Positive emotions Gradually accept reality of loss Adapt to changed world Integrate loss over time

26 Who am I now? Where do I belong? How can I take on new roles and responsibilities? How do I find meaning and purpose?

27 Continuing Bonds We are who we are because of our relationship to others Death ends a life not a relationship Ongoing psychological and emotional bond

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29 Complicated / Prolonged grief Approximately 10-20% experience complicated grief Greater risk of adverse physical and mental health outcomes Benefit from grief counseling

30 Prolonged grief Persistent pining / preoccupation Beyond 6 months post death Impairs function in occupational or domestic roles and responsibilities

31 What bereaved families say was helpful Compassion and caring Understanding and listening Information Accessibility of staff Cards after the death Counselling

32 As my body and mind disintegrate, remember that I am still the person I was when life was at its peak