Younger Onset Dementia

Reclaiming my Life

Kate SwafferMSc Dementia Care (2014), BPsych, BA, Chef, Grad Dip Grief Counselling, RN

@KateSwaffer http://kateswaffer.com

My Unseen Disappearing World... It’s looks like a swan, calm and serene on the

surface, paddling furiously below to stay afloat.

• Living well with dementia

• Prescribed Disengagement

• Models of care

• The missing pieces in dementia care

• Language and stigma

Aims of my presentation

• Improve post diagnostic support – From health care professionals including medical practitioners as

well as family, carers & service providers including people

working for dementia advocacy or carer organisations

• Two models of care– Prescribed Disengagement

– Meaningful engagement & support for disAbilities

• > 200 types or causes of Alzheimer’s Disease and other dementias

• 44 million people with dementia globally (ADI, 2013)

• Worldwide, 1 new diagnosis every 4 seconds (ADI, 2013)

• > 332,000 with dementia in Australia

• Terminal progressive illness

• Treatment for some types of AD, NO cure

Why I speak out• Expert by the lived experience

• So others can walk in our shoes

• To educate and raise awareness

• To stop Prescribed Disengagement

• To understand the human cost of dementia

• Break down the myths, discrimination and stigma

• To improve the care & QoL for people with dementia and their families

• So it is no longer, about us, without us

Living well with dementia

... we are still mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties;

it is a tragedy so many just see our deficits.

Treat the symptoms of

dementia as

disAbilities

Prescribed Disengagement

• What is it?

What’s the cost?• Discrimination, Stigma, Isolation

• Focuses on deficits

• Hopelessness

• Learned helplessness

• Exacerbates the myths of dementias, e.g.

– We are not all there, the long goodbye

– We can no longer function at all

Medical Model of care

Diagnosis

Prescribed Disengagement

Referral to service provider

ACD’s and Aged Care

Some lifestyle support

disAbility/social model of

care

Confirmation of diagnosis

Assessment of disAbilities

Rehabilitation including. counseling

Strategies to manage disAbilities

Focus on wellbeing & QoL

Continued meaningful engagement, including employment

ACD’s

Aged care, if required

The missing pieces• Full inclusion of PWD, at every level, in every

conversation

• Non pharmacological & positive psychosocial interventions

– Including rehabilitation

• Individualised and meaningful activities

• Purpose

• disAbility services

Interventions for dementia• Advocacy and activism

• Studying

• Phenomenology

• Auto ethnography

• Neuroplasticity brain and body

training

• Neuro Physiotherapy

• Exercise 6 days/week –

walking, balance exercises,

Pilates and stretching

• Rehabilitation

• Hydrotherapy

• Speech Pathology (why are

they not in care plans?!)

Interventions for dementia• Occupational Therapy

• Blogging

• Creative writing

• Poetry

• Healthy nutrition – especially

avoiding processed sugar

• Supplements

• Creative therapy, eg music, art

• Mind Mapping

• Volunteering

• Laughter and a lot of humour

• Exploring my spiritual life

• Love

• Reading

Interventions for dementia• Belief

• Transcendental Meditation, 20

minutes, 3 times a day

• Self Hypnosis and Mindfulness

for pain relief to prevent

negative cognitive effects of

medication

• Family time

• Nurturing friendships

• Social media

• Resilience

• Living every day as if it is my

last, just in case it is

Language is a powerful toolOur words do reflect our

thoughts and feelings, and can show respect or disrespect;

they also show how others feel about us.

(Sabat 2001; Parker 2001; Hoffert 2006)

“When your child is no longer a child, you will have to find a new language”

(Fossum, K 2003, don’t look back, p. 108)

Does the language and medical model of care

currently used in dementia,

versus

the disAbility/social model of dementia care

make a difference to the lives of people with

dementia?

Alzheimer’s Australia

Language Guidelines 2014

https://fightdementia.org.au/sites/default/files/language%20guidelines.pdf

• Exclusive membership to PWD

• Weekly online support groups

• Monthly online cafes

• Monthly webinars

• DAM Master classes

• http://www.dementiaallianceinternational.org

10 Dignity in Care Principles1. Zero tolerance of all forms of abuse

2. Support people with the same respect you would want for yourself or a member of your family

3. Treat each person as an individual by offering a personalised service

4. Enable people to maintain the maximum possibly level of independence, choice, and control

5. Listen and support people to express their needs and wants

6. Respect people’s privacy

7. Ensure people feel able to complain without fear of retribution

8. Engage with family members and carers as care partners

9. Assist people to maintain confidence and a positive self esteem

10. Act to alleviate people's loneliness and isolation.

SA Health, 2014, Dignity in Care,

http://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/clinical+resources/clinical+programs/dignity+in+car

e.

Thank you.

@KateSwaffer

http://kateswaffer.com

http://dementiaallianceinternational.org