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Alzheimer’s Australia NSW

Navigating grief and loss experiencesLyndell Huskins 22nd October 2010

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Projections

• 257,000 in 2010

• 565,000 in 2030

• 981,000 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

• Guidance in preparing the group• Procedure• Group guidelines• Self care• Reconnection

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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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“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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Grief is an ever-present issue when dealingwith carers every day, even though we are

often hesitant to identify it.

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The session has been very worthwhile;… It helps to know that it is “normal” and hear how other people cope…

What I am experiencing is real, is individual and shared by other carers

I found the session to be insightful, cathartic and redeeming…thank you

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“Grief changes you…You are carrying something new with you…How can you

not be different?

I think the most authentic gift I have to give is the sharing of my experience…”

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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 Projectwww.alzheimers.org