© Alzheimer’s Australia NSW 2009 National Dementia Helpline 1800 100 500

Alzheimer’s Australia NSW

Navigating grief and loss experiencesLyndell Huskins 3rd June 2009

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Projections

• 230,000 in 2008

• 465,000 in 2030

• 730,000 in 2050

Source: Access Economics Dementia Prevalence Estimates 2005

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Support groups

• Support groups are a cost effective method in assisting carers

• Quality Support Groups Research Project

• What defines a quality dementia carer support group?

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Key finding

Carers of people with dementia are constantly faced with emotional stress due to the experience of grief and loss.

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5 dimensions of grief and loss

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Grief…is an ever present stressor … it is a “true grief”… that is equal to or greater than the stress experienced in postdeath grieving (Noyes et al, 2009).

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• Skills of the group leader can determine the success of the group, and

• Have a positive or negative impact on group outcomes and the needs of carers

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Grief and loss module

• A two day experiential workshop

• A leaders guide

• A structured session plan

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Aims

• Introduce the topic

• Knowledge is enhanced

• Safe supportive environment

• Increased confidence

• Strengths are fostered and validated

• Mutual aid is engendered

• Structure and guidance

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Outcomes

• Accommodation of grief

• Resilience is strengthened

• Strategies are articulated and validated

• Emotional expression is attended to

• Increased understanding of change and dementia

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Worden’s model of grief (1982)

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• Disenfranchised grief

• Anticipatory grief

• Ambiguous loss

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Arbitrators of grief

• Religion

• Spirituality

• Culture

• Relationships

• Dementia

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Common anxieties

• Feeling overwhelmed

• Not knowing what to do

• Crying

• Managing disclosure and anger

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Leaders Guide

• Supports the workshop

• Reference tool

• Advice and strategies for leaders

• Practical interventions for carers

• Referral and resource information

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Session Plan

• Express painful emotions

• Learn ways of understanding and accommodating grief

• Share experiences

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“Although I am very comfortable as a group leader, I wasn’t sure how I would go in dealing with this topic… The session plan helped me…I was able to be a bit more assertive…in a way I felt liberated.”

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Session Plan

• Guidance in preparing the group

• Procedure

• Group guidelines

• Self care

• Reconnection

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“During the session there were …times when carers displayed obvious signs of grief…at no time did I detect that anyone was uncomfortable…indeed there was a great deal of respect and compassion…”

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Mutual Aid

The giving and receiving of information;

the sharing of stories

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Grief changes you …I think the most authentic gift I have to give is the sharing of my experience…(Jones. 2009)

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The… session encouraged open and frank discussion. People appeared comfortable to talk about how they are feeling…and what they are experiencing ….(spouse)I liked learning about how other carers deal with different situations… we have to acknowledge the loss…(adult child)The session has been very worthwhile;… It helps to know that it is “normal” and hear how other people cope…(spouse)

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This is an issue I haven’t readily addressed….This is a good tool to approach it. I would still … feel more comfortable with an outsider facilitating the session.

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Grief is an ever-present issue when dealing with carers every day, even though we are often hesitant to identify it.

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Truly effective groups can require a lot more than just putting a group of carers together and encouraging them to share their feelings…

A shared understanding of the grieving process and how stories and feelings will be responded to, combined with careful planning and skilled facilitation, can play a key role in creating carer support groups that offer a high quality of practical and emotional support (O’Shea1999).

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Thank you

Any questions?

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Quality Support Groups Research Project

www.alzheimers.org