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Serving Americas Seniors: Wisdom in Times of Tough Choices

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Title: Serving Americas Seniors: Wisdom in Times of Tough Choices


1
Serving Americas Seniors Wisdom in Times of
Tough Choices
  • Rhonda J.V. Montgomery
  • University of Wisconsin-Milwaukee

2
  • Not only must we give a higher priority to
    solving some of the more immediate problems of
    concern to older people, but we must be
    developing more effective long range plans in
    this area.
  • Arthur S. Flemming

3
  • If you fail to plan, you plan to fail
  • Old Saying

4
Embrace Change
  • New Clients
  • New Challenges
  • New Rules
  • New Role

5
The Long Term Care System
  • Home and Community Based Services
  • The Aging Network
  • State Units on Aging
  • Area Agencies on Aging
  • Provider Organizations
  • Family caregivers

6
  • The art of progress is to preserve order amid
    change, and to preserve change amid order.
  • Alfred North Whitehead

7
What is long term care?
  • Housing
  • There is no place like home
  • Home is where the heart is
  • Health
  • Physical health
  • Food, exercise and medical care
  • Emotional Health
  • Socialization
  • Spiritual Health

8
  • Facts do not cease to exist because they are
    ignored.
  • Aldous Huxley
  • English Author (Brave New World)

9
Who to serve?
  • All senior citizens?
  • Needy senior citizens?
  • Those who show up at our door?

10
  • The world is white no longer, and it will never
    be white again. James Baldwin

11
Diversity of Clients
  • Ethnicity/Culture
  • Family structure
  • Singles without family
  • Spouses
  • Adult children
  • Grandparents
  • Income
  • Health
  • Frail
  • Home-bound
  • Healthy

12
  • Consistency is the last refuge of the
    unimaginative Oscar Wilde
  • There are those who would misteach us that to
    stick in a rut is consistency and virtue, and
    that to climb out of the rut is inconsistency -
    and vice.
  • - Mark Twain

13
Consumer Choice Means
  • Options
  • Services
  • Choice to use or not to use
  • Personal responsibility for consequences
  • Knowledge of
  • Costs
  • Risks

14
  • They are ill discoverers that think there is no
    land, when they see nothing but sea.
  • Francis Bacon

15
  • When it is dark enough, you can see the stars.
  • - Charles A. Beard -
  • Social and Political Historian
  • The Rise of the American Civilization

16
Seek and Support New Partners
  • Formal providers
  • Housing
  • Health Care Social Services
  • New playmates
  • Institutional settings
  • Ethnic Organizations
  • Private Pay Providers
  • Family Members

17
  • How do I work? I grope.
  • Albert Einstein

18
  • Results! Why, man I have gotten a lot of
    results. I know several thousand things that
    wont work.
  • Thomas A. Edison

19
Blue Print for Building partnershipsLessons from
the Alzheimers Disease Grants to State Program
  • 1. Build Awareness
  • 2. Establish Trust and Credibility
  • 3. Build Service Capacity
  • 4. Create New Services
  • 5. Develop Resources
  • 6. Stabilize Demonstration Program
    Services

20
Step 1 Build Awareness
  • Who?
  • General Public
  • Providers
  • Community Leaders
  • How?
  • Education
  • Training
  • Outreach

21
Step 2 Establish Trust and Credibility
  • How? Build new Partnerships
  • Aging Network Alzheimer Chapters
  • Aging Network Ethnic Community Organizations
  • Support service providers and health care
    providers

22
Step 3 Build Service Capacity
  • How? Link Infrastructures of Partner
    Organizations
  • Cross training
  • Integrating services into existing organizations
  • centralizing resources
  • Integrate staff

23
Step 4 Create New Services
  • How? Build on new linkages and resources to
  • Create acceptable services
  • Create new models
  • Create new delivery models

24
Step 5 Develop New Resources
  • Locate and groom new sources
  • Build services into state or local system

25
Goal 6 Create stability in demonstration
services
  • How? Link into Long Term Care Systems
  • Create new service systems by formal links among
    diverse programs
  • Link to Health care systems
  • Primary Care initiatives
  • Managed Care Initiative
  • State Medicaid Programs

26
  • Hope is like a road in the country there was
    never a road, but when many people walk on it,
    the road comes into existence.
  • Lin Yutang

27
Harvest the Fruits of Flexibility and Creativity
  • Deep in their roots,
  • All flowers keep the light
  • Theodore Roethke
  • American Poet

28
National Family Caregiver Support ProgramAn
Opportunity for Growth
  • Embrace Change
  • Creativity and flexibility in service design and
    delivery
  • New partnerships
  • Acknowledge Diversity
  • Harvest the fruits

29
Diversity Among Caregivers
  • Gender
  • Generation Age
  • Culture
  • Caregiving Context
  • Functional level of care recipient
  • Living arrangement
  • Formal Supports
  • Informal Supports

30
Caregivers by Relationship to Elder Care Recipient
31
Diversity of Caregiving
  • What they do
  • When they do it
  • How they do it
  • How long they do it

32
Careers Differ in Form
  • Care Tasks Performed
  • Duration of Care

33
Caregiving Career Child
34
Caregiving Career Spouse
35
Basic Premises about Caregiving Careers
  • There is no single, generic caregiver role
  • Caregiving role emerges from prior role
    relationships
  • Role influenced by the unique values, beliefs and
    circumstances
  • Consequently there are
  • Consistencies in the caregiving process.
  • Unique adaptations.

36
  • Caregiving is a dynamic process that unfolds over
    time.
  • The length of career varies.
  • The career is maintained through a process of
    identity change.

37
Diversity of Burdens
  • Difficult tasks/Physical Health
  • Time for other responsibilities
  • Task Overload
  • Privacy
  • Loss of roles/self
  • Isolation
  • Financial Burden
  • Guilt

38
Our Challenge
  • To meet diverse needs on limited budgets within
    systems that often view
  • flexibility as expensive
  • Caregivers as illegitimate clients

39
The Caregiving Career Is a Systematic Change
Process
  • Change in activities
  • Change in relationship with care receiver
  • Change in role and identity of caregiver

40
A Psychological Process That
  • Determines a persons response to the realities of
    the situation.
  • Creates the conditions that cause distress or
    positive feelings as seen in
  • Depression
  • Burden
  • Satisfaction (uplifts)

41
Care Needs Over Time
42
Identity in Phase I
43
Identity Phase II
44
Identity Phase III
45
Identity Phase IV
46
Identity Phase V
47
FIVE PHASES of the Caregiving Career
  • Phase I Help in an extraordinary way
  • Phase II Onset of carer identity recognition
    of extraordinary effort
  • Phase III Onset of hands-on or personal
    care
  • Phase IV Entertaining possibility of
    placement in an alternative
    care environment
  • Phase V Placement or change of primary
    caregiver

48
Phases of Spouse Identity
49
1. Identity Standard (for relating to
care recipient)
  • The rules by which we act (norms values)
  • Influenced by
  • Family relationship
  • Generation
  • Gender
  • Culture

50
Identity Maintenance Process
Role Identity (for dyad)
Identity Standard
Compare
?
Behavior
Self Appraisal
51
Caregivers experience distress when there is
incongruence between self appraisal and identity
standard.
52
Identity Maintenance Process
Identity Standard
Comparison Process
Self Appraisal
Behavior
53
The Caregiving Context
  • The physical and social environment in which care
    is provided
  • Structured by
  • The needs of the care recipient
  • (ADL, IADL, Difficult Behaviors
  • Who is living with the care recipient?
  • Community location and resources.

54
Change in Care Context
  • Increased disability
  • ADL
  • IADL
  • Behavior Problems
  • Change in support system
  • Formal
  • Informal

55
Identity Maintenance Process
Identity Standard
Comparison Process
Self Appraisal
Behavior
Caregiving Context
56
New Role Identity
Identity Standard
?
Comparison Process
Role Conflict
Self Appraisal
Behavior
Caregiving Context
57
Identity Phase II
58
Identity in Third Phase(Hands-on Care)
59
Types of Spouse Distress
  • Taxing on Physical Health
  • Isolation
  • Loss of intimate partner
  • Anger Guilt

60
Ways to Reduce Distress of Spouse in Phase II
  • Merge the care role into spousal identity
  • Change Behavior
  • Introduce service options
  • homemaker/home health
  • Adult day care
  • Make job easier (teach new skills)
  • Change the Appraisal through
  • Education
  • Support groups

61
Identity Maintenance Process
Identity Standard
Comparison Process
Self Appraisal
Behavior
Caregiving Context
62
Change Identity
  • 2. Shift identity to include Caregiver Role
  • Redefine relationship through
  • Support groups
  • Counseling
  • 3. Reject the Caregiver Role
  • Change the care context
  • new living arrangement
  • new caregiver

63
Typical Tool Box for Intervention
  • Education Programs
  • Support Groups
  • Counseling
  • Respite
  • Case Management

64
Who is helped with a shot-gun approach?
65
The Costs of Trial and Error or the Shot-gun
Approach
  • Ineffective intervention as waste of time
  • Family time
  • Provider time
  • A waste of money scattered seeds on infertile
    land
  • Fodder for the politicians why fund a free
    hair-cut?

66
Patterns of Respite Use
  • One third of clients are brief users (
  • Mean length of use was 10 months
  • Among extended users mean duration
  • 16.2 months day care
  • 14.9 months in-home
  • Average amount of use
  • 50 hr per month and total 817 hours for day care
  • 25 hours per moth and total of 283 for in-home

67
Factors That Influence Use
  • Client characteristics
  • Relationship
  • Culture
  • Functional level
  • ADL (in-home)
  • IADL (adult day care)
  • Income
  • Provider Characteristics
  • Cap on amount of service
  • Level of service
  • Social/companion
  • Personal care

68
Day Care Use by Relationship
75
70
65
60
Sons
55
Mean Number of Hours
Other Males
50
45
Daughters
40
Husbands
35
Other Females
30
25
Wives
20
15
10
49
43
37
31
25
19
13
7
1
Months of Use
69
Day Care Use By Ethnicity
75
70
65
60
Other Race
55
50
45
Mean Hours of Use
40
Hispanic
35
White
30
25
20
Black/Aft-AM
15
10
49
41
33
25
17
9
1
Months of Use
70
Respite Negative When
  • Incorrect Form (Brief Use)
  • Negative appraisal from respite workers
  • Negative appraisal from kin
  • Creates work

71
Implications for Providers
  • Know your target population as their
    characteristics are linked to patterns of use.
  • Marketing.
  • Planning.
  • Design services with attention to both level of
    care and type of services.
  • Multiple forms of respite are desirable.
  • Be careful about placing arbitrary limits on
    service. This may be counter productive.

72
What we need to effectively support the Caregiver
Through the Process
  • System of services to offer choice
  • Educational programs that are on-going and offer
    different types of information at different
    times
  • Variety of support groups focused and
    specialized
  • Counseling (peer and professional)
  • Care-managers who observe and listen
  • Respite Multiple forms Multiple levels

73
National Family Caregiver Support ProgramAn
Opportunity for Growth
  • Embrace Change
  • Creativity and flexibility in service design and
    delivery
  • New partnerships
  • Acknowledge Diversity
  • Harvest the fruits

74
  • We should be careful to get out of an experience
    only the wisdom that is in it - and stop there,
    lest we be like the cat that sits down on a hot
    stove lid. She will never sit down on a hot
    stove-lid again and that is well but also she
    will never sit down on a cool one anymore.
  • Mark Twain

75
  • The final test of a leader is that he leaves
    behind in other men the conviction to carry on.
  • Walter Lippman

76
  • Grow old with me!
  • The best is yet to be
  • Robert Browning

77
References
  • RJV Montgomery K.D. Kosloski, Change,
    Continuity and Diversity Among Caregivers
  • http//www.aoa.gov
  • RJV Montgomery (editor). A New Look at
    Community-Based Respite Programs Utilization,
    Satisfaction and Development. (2003) Hayworth
    Press New York.
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