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DEMENTIA BEYOND DISEASE: ENHANCING WELL-BEING

G. Allen Power, MD, FACP

AWA Family Carers’ Workshop

August 2017

MY STORY…

THE BIOMEDICAL MODEL OF DEMENTIA

• Described as a group of degenerative diseases of the brain

• Viewed as mostly progressive, incurable

• Focused on loss, deficit-based

• Policy heavily focused on the costs and burdens of care

• Most funds directed at drug research

BIOMEDICAL ‘FALLOUT’…

• Looks almost exclusively to drug therapy to provide well-being

• Research largely ignores the subjective experience of the person living with the condition

• Quick to stigmatise (‘The long goodbye,’ ‘fading away’)

• Quick to disempower individuals

• Creates institutional, disease-based approaches to care

• Sees distress primarily as a manifestation of disease (‘BPSD’)

ILLUSTRATIVE EXAMPLE:BIGGEST DANGER OF STIGMA à

SELF-FULFILLING PROPHECIES

Kate Swaffer

‘Upon diagnosis I was Prescribed Disengagement™ from my pre-diagnosis life, which the health care system currently still supports. This sets up a chain reaction of hopelessness and fear, and is the beginning of learned helplessness, which negatively impacts a person’s ability to be positive, resilient and proactive, intimately affecting their perception

of well-being and quality of life.’

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THE PROBLEM WITH BPSD

• Relegates people’s expressions to brain disease

• Ignores relational, environmental, and historical factors

• Pathologises normal expressions

• Uses flawed systems of categorisation

• Creates a slippery slope to drug use

• Does not explain how drug use has been successfully eliminated in many residential care homes

• Misapplies psychiatric labels, such as psychosis, delusions and hallucinations

• Has led to inappropriate drug approvals in some countries

PERSONAL EXPRESSIONS MAY REPRESENT…

• Unmet needs / Challenges to well-being*

• Sensory Challenges*

• Response to physical or relational aspects of environment*

• New communication pathways*

• New methods of interpreting and problem solving*

• May be perfectly normal reactions, considering the circumstances!*

• “Dignity distress”*

(*NO medication will help these!)

SHIFTING PARADIGMSHOW WOULD YOU RESPOND IF YOU WERE

TOLD:

• ‘90% of people living with dementia will experience a BPSD during the course of their illness.’

VS

• ‘90% of people living will dementia will find themselves in a situation in which their well-being is

not adequately supported.’

A DIFFERENT LENS

‘The only true voyage of discovery . . . would be not to visit strange lands, but to possess other eyes, to behold the universe through the eyes of another, of a hundred others, to behold the hundred universes that each of

them beholds, that each of them is . . .’

- Marcel Proust

A NEW MODEL(INSPIRED BY THE TRUE EXPERTS…)

A NEW APPROACH RESTS UPONTHREE PILLARS

• ‘Experiential model of dementia’

• Well-being as a primary outcome

• Transformation of the care environment

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A NEW DEFINITION

‘Dementia is a shift in the way a person experiences the

world around her/him.’

WHERE THIS ‘ROAD’ LEADS…

• From fatal disease to changing abilities

• From psychotropic medications to ‘ramps’

• A path to continued growth

• An acceptance of the ‘new normal’

• A directive to help fulfill universal human needs

• A challenge to our interpretations of distress

• A challenge to many of our long-accepted care practices

IN OTHER WORDS:

Everything changes!

A NEW PRIMARY GOAL:ENHANCE WELL-BEING

ONE FRAMEWORK FOR VIEWINGWELL-BEING

ØIdentity ØConnectednessØSecurityØAutonomyØMeaningØGrowthØJoy

Adapted from Fox, et al. (2005 white paper), now ‘The Eden Alternative Domains of Well-Being™’

BENEFITS OF FOCUSING ON WELL-BEING

• Sees the illness in the context of the whole person

• Destigmatises personal expressions

• Understands the power of the relational, historical, and environmental contexts

• Focuses on achievable, life-affirming goals

• Brings important new insights

• Helps eliminate inappropriate drug use

• Is proactive and strengths-based

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A FRAMEWORK FOR HELPING RESTORE A SENSE OF WELL-BEING TRANSFORMATION

• Personal: Both intra-personal (how we see people living with dementia) and inter-personal (how we interact with and support them).

• Physical: Living environments that support the values of home, support the domains of well-being, and provide meaningful cues.

• Operational: How decisions are made,, how communication occurs and conflict is resolved, creation of care partnerships, job descriptions and performance measures, etc., etc.

CHECKING THE COWSWHY ‘NONPHARMACOLOGICAL INTERVENTIONS’

DON’T WORK!

The typical ‘nonpharmacological intervention’ is an attempt to provide person-centred care with a biomedical mindset

• Reactive, not proactive

• Discrete activities, often without underlying meaning for the individual

• Not person-directed

• Not tied into domains of well-being

• Treated like doses of pills

• Superimposed upon the usual care environment

ONE’S OWN HOME CAN BE AN INSTITUTION…

• Stigma

• Lack of education

• Lack of community / financial support

• Caregiver stress and burnout

• Inability to flex rhythms to meet individual needs

• Social isolation

• Overmedication in the home

OPERATIONALISING DOMAINS OF WELL-BEING

EXAMPLES OF ENHANCING WELL-BEING

• Identity/Connectedness: Evolving identity, natural rhythms and ‘sundowning,’ input into arrangement of possessions, inclusion in conversation, optimise communication skills, touch, ‘being’ activities, dedicated HCBS staff, peer support groups, accessible spaces

• Security/Autonomy: Maintaining privacy and dignity, understand changing experience of ‘familiar’ objects and spaces, communication and the verbal-nonverbal connection, spontaneity vs. routine, asking for input, adjusting pace, ‘doing with,’ avoiding ‘surplus safety’ and ‘all-or-none thinking,’ negotiating risk, improving wayfinding

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EXAMPLES (CONT.)

• Meaning/Growth: Purposeful and caregiving activities, focus on existing and emerging strengths, rituals, mentoring and volunteer opportunities, intergenerational activities and grandparenting, creative arts engagement, peer support and advocacy, faith and spirituality

• Joy: Simple pleasures, stimulate the five senses, music/dance, laughter, ‘being,’ enhancing the other domains

A WELL-BEING APPROACH CAN BE USED FOR BOTH:

- ONGOING SUPPORT AND CARE,

AND

- DECODING DISTRESS

EXAMPLE:REFRAMING ‘RESISTANCE’

A QUESTION FOR YOU…

If someone were helping you complete a personal task, what are some things that would make you

want to resist them?

IS DEMENTIA REALLY THE CAUSE OF THE PERSON’S ACTIONS??

People with dementia become distressed for largely the same reasons that you and I do!

The difference is that they may be less able to:• verbalise their feelings and needs,

• remember the information that helps them feel secure and in control, or

• cope with stressful situations

TWO AREAS TO CONSIDER…

•Physical discomfort

•Threats to well-being

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PHYSICAL DISCOMFORT

• Does not have to be due to severe pain or injury

• May be seen during personal care or movement, and/or after periods of immobility

• May be more prevalent later in the day

• Can be recent falls or signs of injury

• Untreated pain can be a cause of delirium

• Can be related to medication side effects, bowel/bladder needs

• Many people, even with advanced cognitive changes, can still answer when asked about pain

A WELL-BEING APPROACH

WHEN YOU MEET ‘RESISTANCE ’…

Think first about the domains of

Autonomyand

Security

SECURITY

People are more likely to resist if they feel insecure, frightened, or threatened.

• Unfamiliar care staff or locations

• Being awoken suddenly

• Not knowing what comes next

• Being unclothed and/or receiving personal care

• Being dependent

• Difficulty comprehending words

• Nonverbal signals!

AUTONOMY

Many people resist when approached to do something…

• They do not wish to do

• At a time they do not wish

• At a pace they do not wish

• With too little explanation of the process

• With little or no input into the process

ENHANCING SECURITY (24/7!)

• Dedicated assignments, especially during personal care

• Respecting boundaries (room and personal)

• Connecting before starting a task

• Carefully explaining each step of each task

• Preserving modesty and dignity

• Body language

• Comfort and pleasant surroundings

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ENHANCING AUTONOMY (24/7!)

• Doing with, not doing for

• ‘Continual consent’ – explain and wait for understanding and acceptance with each step

• Frequent requests for input throughout the task

• Appropriate pace to enable participation

• “The least that I can do; the most that you can do.”

• Think ‘SEE’: Slow down, Engage, Empower

• Change times, techniques, or break up tasks as needed

ENHANCING OTHER WELL-BEING DOMAINS

• Identity – know the person, share stories during care, use preferred term of address, know personal rhythms and style

• Connectedness – dedicated assignments, relationship building during tasks, familiar objects can bring comfort

• Meaning – tie in to past history, ask for input and guidance, helping with daily life, project teams, volunteerism

• Growth – relationship-building, cultural and civic opportunities, don’t infantilise

• Joy – simple pleasures, TLC/spa approaches, stimulate all the senses, use of personalised music (which helps all seven domains!)

DR. RICHARD TAYLOR

‘I believe that as people

progress with dementia, their humanity increases.’

THANK YOU!LAST QUESTIONS?

DRALPOWER@GMAIL.COMWWW.ALPOWER.NET