Post Dementia Diagnosis Enablement

Raising awareness & reducing stigma

Denise Craig

Senior Psychologist Co-Chair, Statewide Dementia Clinical Network

Department of Health

30 minutes to highlight:

• Between diagnosis and death we have a lot of living to do, and life to support

• But - consumers & HPs often at a loss• Will a guide for HPs help to enable?• A case study – enablement in practice• The usual challenges• Beyond Health Professionals –

enablement is supporting & empowering

My background• Mum – incremental losses from 59• Episodic insight and despair

– She couldn’t walk it away, though she tried– Aware it was terminal, goal 50th Anniversary– We felt hopelessly inadequate and I made

dementia care my vocation• Later find a book on terminal illness• Refused help – continued to work (enabled by Big W)

• LWML – good for Dad • Mum died 6/12 prior to 50th Anniversary

My impressions• Through the fog of impairment, people left

to do their best with little or no support• May or may not be offered medication (with little

hope attached)

• Little emphasis/ awareness of enablement & supporting maximal independence

• Where there is insight → despair/frustration • Often heightened perception of ‘vibes’ and

non-verbals (and feeling devalued)

• PWD generally aware that their limitations are not well understood. Too much or too

little is expected of them• Frequently there is confusion & negativity

over benefit of onward referral• GP: ‘No one can help him, he has

dementia. What good can YOU do!’ This perpetuates hopelessness (YOD FTD recently ‘let go’ from employ, suicidal & living next to railway track)

• Families overwhelmed & immobilised (often assume no help is available)

• If the dx was different, would it be easier to discuss options & generate a care plan?

• Often a belief that services do not exist and/or couldn’t help, so there is no further discussion about potential benefits of enablement support.

Think needs, and speak in terms of what things are most important to

the person.

Project background• My roles – psychologist ACAT/Memory Service & SDCN

– I’m looking at faces of consumers and HPs alike• 2012 – YOD Facebook page to flush out perspectives• Led to Christine & Kate et al: confronting conversations!• YOD page highlighted pattern of criticism towards HPs

– Little help after diagnosis– Limited awareness of perspective of PWD– HPs address carers at expense of PWD (this happened for Mum)

– Consumers left to work it out themselves• I committed to action – Guide for GPs (and consumers)

Dementia Enablement GuideRole of Health Professionals in support

. 1. GP is pivotal central point. • Key point - GPs aware of consumer priorities & values, &

potential benefit of referral

By discussing priorities we are communicating to people that they matter and that there is life after diagnosis

Care plans which detail abilities, disabilities and wishes should be generated and reviewed regularly and referral to appropriate therapeutic interventions offered.

Dementia Enablement GuideRole of Health Professionals in support

2. Allied Health and other HPsI’ve heard:• ‘How can we help them when they have dementia?’ • ‘People with dementia can’t have goals. Can they?’ • ‘How can they understand what we’re talking about?’ • ‘How can they remember what we do in session?’ • ‘They’re patients – not consumers.’

It’s time for a paradigm shift!

Dementia Enablement GuideThe Guide construction:

• Multidisciplinary - Geriatrician, RNs, OTs, dietitian, speech path, GP, physio, consumer and psychologist

• A second tier of advisors included a group PWD, care partners, clinicians and academics. Work on a consumer version nearing completion now

Operation raise awareness, and trial phase:• GPs are being visited with PHN support • Educating GPs - equitable access to support post dx• Kiama, NSW, as a part of their DFC project• It is critical that consumers are offered options

DTSC Fellowship providing valuable assistance

Operation ‘raise awareness’

• During Dementia Awareness month, YOD page featured enablement themed posts by consumers, HPs & supportive others

• I hoped this would encourage consumers to be proactive and help ‘educate’ HPs

• Reactions globally suggested the concept a winner and is now being pursued widely

Enablement is not rocket science…

Meet AC• 78, married 55 years. Mixed AD & VD. Referred

to Memory Service for review.• Supportive son and daughter.• Medical hx: hypertension, bilateral knee

replacements, OA, Occipital head injury post fall from a ladder many years earlier

• Reason for referral to psychologist:– Apathy– Carer stress– Dementia Education

Psychology/Dementia Advisor: Tension triggers included:• AC resisting certain foods (e.g. salads) (resulting in friction)

• Resisting meds & misleading wife. Wife checking mouth and finding tablets in toilet, sink, lounge chair

• Spending his days sitting: resisting activity, ceased helping with domestics, wife tired & frustrated

• Resisting social engagement but talkative when out• Relationship/carer strain & lack of u/s of AC’s difficulties • Wife seeking day respite – AC resistant ‘It’s for sick old

people’ & he was once a bus driver for this service• Daughter counselling Mum about nutrition & the need to

encourage gluten free, superfoods, coconut oil & green smoothies.

Psychology/Dementia Advisor role:• Dementia Education and advice• Screened for depression (+) and anxiety (-)• Supportive counselling - adjustment to dx and ongoing support• Information and access to support services• Referral to a couple’s social support group• Encouraged lifestyle changes – AC began daily walks/swims• Discussed AHD and facilitated this with GP• Drug study info (at their request)• Access to continence advisor• Wife reported all aged care service personnel were ‘marvellous’,

however ‘AC misleading everyone who visits so it’s a waste of time’. She complained their life had become ‘all about dementia’

• Wife adamant ‘We’ve always eaten salad for lunch, he’s just being difficult’

• Offered onward AH referral as follows…

Allied Health Referrals• Drive Ax – AC ceased voluntarily prior to ax• OT for ADLs - AC declined• Pharmacy review of meds re which tablets

could be crushed (one could be crushed)

• Dietetics – Ax & dietary recommendations – Diet adequate & weight stable – AC ‘Just not hungry’ at lunch on occasions– Minor adjustments suggested (e.g. ↑ calcium) – Wife validated but encouraged to adjust some meals

slightly and continue to monitor meds

AC• Speech Pathologist (Dysphagia management)• Impression

AC presented with mild oral & pharyngeal dysphagia, likely due to reduction in fine motor control & timing of the muscles involved in swallowing. Reduced sensory awareness was a factor

• His tongue had reduced ability & food residue remained in his mouth after a swallow. He had reduced ability to control the fluid contents of his mouth

• AC’s weakened throat muscle contributed to poor clearance of food & fluid. His difficulty with swallowing tablets was consistent with the clinical findings

Recommendations1. Continue to eat his usual diet & drink regular fluids. Tucking his chin down when swallowing may increase protection of his airway.

2. Take medications with cold water instead of room temperature to stimulate his sensory function. Use a thicker media (like custard) as needed with problem tablets to compensate for reduced tongue control.

3. Maintain very good oral hygiene and flush mouth with fluid following meals to reduce oral residue that could grow bacteria or end up in his airway. A rinse of water is sufficient.

4. Use the following strategies when eating:• Reduce or avoid environmental distractions• Maintain a calm environment.• Gentle verbal prompts.• Offer favourite foods & enhance flavours with sauces and/or spices if needed.• Allow time for AC to eat to his capability.

5. AC’s wife educated about dysphagia & asked to monitor his swallowing behaviour & request re-assessment with the Speech Pathologist if she notices further avoidance behaviour or he declines to eat.

6. Monitor for signs of aspiration & developing pneumonia & consult GP immediately if concerned

At follow-up• I established that AC’s daughter had encouraged

drinking ‘room temperature fluids’ & once cold fluid used, tablet taking was easier

• Wife started seeing Carer’s Qld for her own counselling as ‘everything has become about dementia’ became worse with the (enabling) allied health involvement.

• Speech pathology, dietitian & psychology follow-up until AC and his wife were on track again – then GP

• Conclusion: AC and his wife received support and guidance from specialists because he was not ‘just being difficult’ – he was misunderstood. Without this support they would have remained frustrated by changes in his ability to swallow. GP may have said ‘What can YOU do, he has dementia’.

Usual Challenges

Dementia stigma – the belief that referral is pointlessWe need to:

– Believe in enablement and potential benefits– Educate HPs about potential outcomes– Supportive upskilling – understanding

generally improves with evidence! – Educate consumers so they then ask more of

their HPs

Usual Challenges

• Understanding pathways to HPs– In Cairns, PHN helping enormously– PHN facilitate access through desktop icon,

supporting best practice care, information regarding eligibility criteria for various options

– PHNs are introducing information sharing on a whole new level. This saves recreating the wheel as various tools and pathways are readily shared

Usual Challenges

Having access to HPs– Not everyone will have access to HPs– Improvisation can help – there can be some

overlap between professionals – Is telehealth an option?– Privately under GP health plan? Don’t

assume without discussing

Usual ChallengesHPs often lack dementia confidence

– Let’s educate, mentor, support, encourage…Fear of opening the floodgates

AH leaders have expressed this – ‘If we open up the floodgates to PWD we’ll never cope with the workload’

– Discuss equitable access – don’t deny because there is great need

HP beliefs e.g. ‘apathy or lack of insight rules out support’

• Should AC’s apathy & lack of insight have ruled him out of our support?

• Discuss tailored approaches to meeting needs.

Beware: Consumer goals or our goals?

• Facebook user – SC • Chronic pain, obesity, depression, anxiety,

suicidal….• Low income, socially isolated• My goal: psychologist – 2 sessions only• His chosen support: Bowen therapy. This

provided the most profound support. Gentle, respectful, nurturing, caring…

Consumer goals or our goals?• Mr W – spent his last thousands flying

unaccompanied to Europe, to a 1 month ‘retreat’, on basis of wild claims for improvement in DLB. His goal, not mine, and I was worried

• Lived in & attended daily sessions• Returned insightful about lack of cure. He

DID achieve meaningful support through group therapy, meditation, friendships, diet, strengthened religiosity and peace

Take home messages, I hope…• We must respect & support the potential of

PWD, it’s the cornerstone of good care• It is unethical to leave PWD with a sense

of hopelessness & no support• PWD acutely aware of being ‘written off’,

which is disabling / disempowering. Be a leader – discuss & support values/wishes

• Review supportive plans regularlyBe brave and reflect on your own beliefs

Final thought:“I thought growing older

would take longer!”

Questions or comments?