Mary McCarron, PhD

Addressing Dementia Specific Needs: Addressing Dementia Specific Needs: Challenges and Opportunities in Care Challenges and Opportunities in Care

Demographic TrendsModerate, Severe and Profound 1974, 1981, 1996, 2000, 2003, 2006, 2007

0

1000

2000

3000

4000

5000

6000

1974 1981 1996 2000 2003 2006 2007

0-1920-3435-5455+

National Intellectual Disability Database, 2007. Health Research Board, Ireland

Prevalence rates – numbers per 1,000 of the general population for each age group

Survival in Persons with Down syndrome

Distinct Trend in increased survival from; - 9 years in 1929- 12 years in 1949- 49 years in 1997 (Baird & Sadovnick 1998; Yang et al 2002)

Dementia is a syndrome due to disease of the brain. It is generally progressive and is characterised by:

• impaired memory, judgement and disorientation

• impaired ability to learn and reason• high levels of stress• Sensitivity to local and social environment

What is Dementia?

8%

55%

75%

15% 23%

70%

0%

20%

40%

60%

80%

100%

35-49 50-59 60+ 65-74 75-84 85-94

Down Syndrome Non DS ID

Lai, F. Williams, R. 1989 Archives of Neurology; Cooper, SA. 1997 JIDR

Prevalence of Dementia in People with Down Syndrome & People with Intellectual Disability

Daughters of Charity: No of clients with DS who developed dementia over 14 year period

Year Number (80) % w/ Dementia1993 7 8.7%1994 17 21.25%1995 19 23.75%1996 21 26.25%1997 26 32.5%1998 35 43.75%1999 38 47.5%2000 42 52.5%2002 54 67.5%2003 59 73.7%

2005 64 80%

2007 67 83.75%

• Assessment Needs

• Approaches and Principles in Care

• End of Life Care

Addressing Dementia Specific NeedsAddressing Dementia Specific Needs

What Makes Diagnosis Difficult? • Lack of awareness by formal and informal caregivers of the significance of

decline

• Conditions associated with ID may mistaken for signs of dementia

• Individuals with ID may not be able to report signs and symptoms

• Most dementia scales used in the generic population are not relevant to people with ID

• Lack of baseline performance from which to measure change and frequent staff changes

• Dementia may present differently in people with ID-Measuring change from previous level of functioning- co-morbid conditions (epilepsy, medication, communication problems…)

Consider other physical or mental health problems:– Depression or other mental illness– Sensory impairment:vision/hearing– Thyroid impairment, B12, folate deficiency– Medical problem- drugs, acute, chronic, infection,

pain, epilepsy– Major life events: Separation, bereavement,

environmental changes

What should be ruled out: Differential diagnosis

Vital signsFull physical examinationComplete blood count-

FBC, E/LFT, ESR, TFT,Folate& B12, U&E, drug levels etc.

UrinalysisElectrocardiogram(ECG)Vision, hearingMental healthSleep and weight graphs

Neuropsychological testing

- Formal assessment of cognitive state with scales

- Start assessments from middle age adulthood

Consider:Chest x rayCT, MRI

Approach to cognitive decline: Diagnostic Workup

Critical Elements in Assessing Dementia in persons with ID

• Distinguishing typical features from those of deterioration

• Rating severity of change relative to previous level of functioning

• Screening for other explanations and out ruling other causes

• Charting changes in cognition and social functioning over time

Examples include:• getting muddled or confused• forgetting everyday work/social events• difficulty locating recently placed objects• losing items and blaming others• forgetting names that used to be known• getting lost in previously familiar places• unable to follow easy instructions• requiring supervision to complete tasks previously

completed unaided• decline in standardized cognitive tests

Decline in Memory

Examples include:• mixing up day and night• wandering and getting lost• difficulty in locating bedroom, toilet etc• apraxia- decline in ability to: dress, self-feed,

brush teeth and hair, personal hygiene• decline in language• loss of ability in reading, writing and money

skills• decline in standardized cognitive tests.

Decline in other cognitive skills: Judgement and thinking, planning and organising

• emotional liability

• irritability

• apathy

• coarsening of existing personality traits or social behaviour

Decline in emotional control, motivation or social behaviour

• Epilepsy

• Gait disturbance

• Incontinence

Additional Markers

Important Principles in Care: Personhood and Dementia

Normal Aged Brain (1,300 Normal Aged Brain (1,300 gmsgms) Alzheimer Brain (560 ) Alzheimer Brain (560 gmsgms))(Courtesy of Dr. (Courtesy of Dr. JerzyJerzy WegielWegiel))

Early Stages: Promoting good practice in dementia care

Good dementia care is slow care.o Emphasise maintaining skillso Developing empowering environments and approaches to care o Provide structure and supports to daily routines and to help

orientation.o Simplify routines & reduce choices.o Communication strategies- Use memory aids such as diaries, object of

reference and timetables.o Keep verbal requests simple & clear, and use additional cues and

prompts.• Supporting the person maintain relationships and previously enjoyed

valued life activities

Middle stage: Promoting good practice in dementia care practices

Preservation of function

Maintain and review physical health and mobility.

Consider how the person communicates. Much more than accuracy of the verbal content ..interpreting the meaning behind the words consider validation therapy reminiscence, reality orientation.

Aids and adaptations to support continued independence in global day to day functioning and address safety issues

Work with families, carers and other residents

Strategies to deal with agitation and distress.

Late stage Care principles

Quality time given to personal care.Reassuring and confident communication.24 hour care - nutrition, lifting and handling .Skin Care and prevention of pressure sores.Pain assessment Prevention of infection.Safety issues.Work with families, carers and other residents re terminal care and death.

The Personhood Paradigm

Experience of dementia is unique to the individual and depends upon the interaction of five key factors:

D=P+B+H+NI+ SP

Kitwood (1996)

Personhood and Dementia

The most devastating loss of all for the person

with dementia can be ‘the loss of self’

Source: Davis 1993

Reflections

……how personhood is undermined in dementia care-the

story of Margaret

What do people with What do people with dementia need ?dementia need ?

LOVELOVE

Attachment

Comfort

Inclusion

Occupation Identity

The main psychological needs of people with dementia

Source - Kitwood 1997

Caring for persons with an Intellectual Disability who are deeply forgetful: Identity and Relationships

• Much of self identify belongs not to self reflection but to the mutual recognition between two people.

• When dementia brings loss of memory, language and coordination as with a fragmented image the knowledge preserved in the relationship can allow the gaps to be partly filled in.

..’Today we are alive, today we know each other and share simple joys a walk along the canal ..our memories ..many of which I alone hold the key to unlock now’ ( Betty Davis in Davis 1989, p140)

Caring for persons who are deeply forgetful Identity and Relationships

• ‘It is part of loving, to know another so well that their turn of phrase, their responses, their humour can be predicted…..It is part of the joy of being loved to be so predicted’ .

Oppenheimer, C (2006) I am, thou art: personal identity in dementia . In: Hughes et al (eds) Dementia: Mind, Meaning and the person. p200

• However many times this is lost…..and how can we preserve and nurture it in the field of ID?

Personhood and Dementia

• ‘The reality is that until the very advanced and even terminal stage of dementia, the person with dementia will usually have sporadically articulated memories of deeply meaningful events and relationships ensconced in long term memory’.

(Stephan, Post 2006) Respectare: moral respect for the lives of the deeply forgetful. In: Hughes et al (eds) Dementia: Mind, Meaning and the person p 231)

Caring for persons who are deeply forgetful: Identity and Dementia

• It is the family and friends of people with dementia who are the most important safekeepers of their identities, insofar as they hold their histories, understand what was important to them in their former lives, and remember preferences and habits of thought’.

• In ID Services this is very often staff…….

Oppenheimer, C (2006) I am, thou art: personal identity in dementia . In: Hughes et al (eds) Dementia: Mind, Meaning and the person. p200

Dementia: End of Life Care Challenges• Philosophy for Care: People with ID Grow & Develop vs.

Decline & Die

• Attachment to clients: Acting as a surrogate family for clients.

• Trained to maintain health and fight illness vs. communication with persons who are dying

• Difficult to define the terminal stages of the disease: Variability in the person’s response; Lack of predictability of death or difficulty in predicting survival time

• ‘Social death’ may precede clinical or biological death. The Person That is Known “Is No Longer There”(Sweeting 1997)

Terminal or End Stage DementiaNeuro-cognitive Changes: Progressive worsening of memory,

profound confusion and disorientation, apathy, inability to verbally communicate, weakness and fatigue, seizure activity, unresponsiveness and coma.

Functional: Immobility and hypertonia, total assistance in all ADLs, and incontinence.

Nutritional: loss of appetite, difficulty in eating, swallowing difficulties and a propensity to aspirate.

Co-morbid Health Conditions: Respiratory difficulties, recurrent infections, constipation, and the general complications of immobility

(McCarron, 2003)

Some Critical Decisions in Terminal dementia for persons with ID

Offering or Withholding:• Investigations and aggressive work up for medical and emotional

problems (benefits vs. risk)

• Actively treating acute medical conditions/illness (medications, IV fluids etc).

• Pain recognition and pain management

• Artificial nutrition and hydration-tube feeding

• Resuscitation

• Care setting and Transfer issues.

Supporting persons with ID and end-stage dementia: Some important questions to help

guide decision making

What is the potential for beneficial outcomes of this care intervention for this person?

What is the potential for inducing distress for this person?

What are the goals and desired outcomes of care and will interventions assist in meeting those goals?

Case Report………………

Giving a directive ‘palliative care approach’in and of itself is not helpful in the absence of real support in terms of specific Palliative Care Intervention Guidelines and consultative palliative care expertise with staff education and support.

Critical Questions for Services Supporting Persons with Terminal Dementia

• Has a formal diagnosis of dementia been made. Has the person been informed? Has family or staff been informed?

• In what situations will a service provide care for an individual who is dying? If not,… how/when will person be transferred and to where?

• Is the environment suitable, do staff have sufficient skills and expertise and if not what supports can you put in place?

• Does a formal relationship exist between the service and hospice (or other palliative care/end-of-life provider)?

• Is there joint training for staff of both providers?

• Is there recognition that whether persons die in place or are transferred that there will be bereavement issues for staff, other consumers and families?

The Package

The standards of practice we createAnd the people we train

Will look after usWhen it’s our turn to receive care. . .

Are you ready?