Week 8 health and healing - Dignity in Persons with Dementia And soC in stroke

What is the psychosocial typology of dementia

Onset: gradual

Course: progressive

Degree of incapacitation: non-incapacitation due to cognitive impairment

Outcome: fatal illness, leads to severe cognitive impairment, loss of bodily functions, and death

Historical def: dignity of merit

Special dignity that comes from a person holding a special role or status.

Historical def: Nordenfelt's four varieties of dignity

Dignity as merit; dignity as moral stature' dignity of identity

Historical def: dignity of moral stature

Bestowed on a person for doing good deeds

Historical def: menschenwurde or "human dignity"

Human have this type of dignity solely by being human

Gallagher's self-regarding and other-regarding dignity

Dignity should be considered as a two-pronged professional value - as a subjective value directed towards self, related to self-respect, and as a value directed towards "respect for dignity" inherent in others

Woodruff's perspectives on dignity and dementia

Basic dignity possessed equally by all members of a species, and a refined dignity requiring individual effort and social support to exercise one's species-specific capacities.

-the distinction between the "then self" and "now self"

Absolute dignity:

is an inherent emanation of human rights that cannot be destroyed.

It is the notion of self, acknowledging a person's self-identity, personal values, personhood, and meaning in life, which fosters a person's self-respect and the feeling of worthiness.

Relative dignity

manifests within the social and cultural environment and influenced through external interactions which can be measured.

Is a more mutable subdimension with more lability and variability. The interactivity of values appears when a person has direct contact with other people or environmental factors; potential violation of dignity also exists between asymmetric relationships. A person's attitudes, feelings, and actions may change based on external circumstances, making the external influence on dignity variable and useful in promoting dignity in PwD

Attributes: of dignity of people living with dementia

Worthlessness: The existence of worthiness confirms people's sense of self and further validates dignity as a core humanistic value.

Respect: is shared between both absolute and relative dignity but incorporated differently. Intrinsically, people need to sustain self-respect with the necessary self-esteem and confidence

Autonomy as a key underlying factor: permits people to act freely within their capacity without hinderance

Antecedents: of dignity of people living with dementia

Empowerment: is the process in which individuals become more confident with the power to successfully take actions or have control over events.

Non-maleficence, or do no harm: is connected with dignity because it provides the minimum level of

ethically grounded guidance for both people who try to declare their dignity and others who shelter those

people's dignity

Adaptive environmental scaffolding: is an approach to ensuring the required resources, like physical

foundational support, are in place to sustain people's dignity.

Consequences: of dignity of people living with dementia

-Enhanced quality of life

-the baseline health status and well-being. Proper assessment and management of symptoms and support of

people's emotions and spirituality

What is dignity work in the context of informal caregiving in dementia?

In our judgement, the work to develop virtues such as patience, gentleness and sensitivity (being "a good wife and good caregiver"), and their creative behavioral strategies designed to preserve the dignity of their spouses (for example, observing and intervening whenever their husbands dignity were threatened), qualifies to be labeled "Dignity work."

What is sense of coherence?

"Sense of coherence (SoC) is an increasingly popular topic in positive psychology, widely used in clinical and health psychology as an indicator of psychological resilience or health maintenance to explain how people in high-stress situations can either maintain their health or develop pathology"

"Individuals with high SoC levels are better equipped to handle adverse events and promote their physical and mental well-being"

Psychosocial typology of stroke

Onset: Acute

Course: constant

Degree of incapacitation: Incapacitation

Outcome: shortened life span, possibly fatal

What is sense of coherence as a core concept in Antonovsky's salutogenic model of health theory?

SoC was defined as "A global orientation that expresses the extent to which one has a pervasive, enduring through dynamic feeling of confidence that

(1) the stimuli deriving from one's internal and external environments in the course of living are structured, predictable, and explicable.

(2) the resources are available to meet the demands posed by these stimuli; and

(3) these demands are challenges, worthy of investment and engagement.

The SoC concept consists of three fundamental elements: comprehensibility, manageability, and meaningfulness.

What is sense of coherence in stroke?

The links between stroke dyads and SoC concept highlight that reciprocal relations within stroke dyads

influence each partner's SoC differentially during the adjustment processes of stroke recovery.

Higher SoC in either partner positively influences their ability to manage stress, adjust to challenges, and maintain health during stroke. The term "stroke family" encompasses both immediate family members and close friends of stroke survivors.

Attributes : sense of coherence in stroke

Comprehensibility : In the early phase of the disease, comprehensibility for stroke patients could be emphasized to improve health education about stroke.

Manageability: As the stages progress, manageability becomes particularly important.

For stroke survivors, manageability may be crucial in the newly diagnosed disability phase to allow them to engage in more recovery training.

Meaningfulness: meaningfulness becomes central in the chronic phase.

For stroke survivors, this could involve finding inspiration for future life despite long-term disabilities.

Antecedents: soC

- sociodemographic factors: age, gender, education level, and income.

- stroke-related factors: SoC was significantly associated with age, hypertension treatment, cigarette

- social factors: social support

- Psychological factors: depression, anxiety, perceived stress

- body function factors: presence of illness,

- caring factors of stroke patients: care burden, time spent in care giving, care giver-patient relationship.

- informal caregivers: informal caregivers' psychological functioning (depression) and caregiving burden negatively predicted their SoC, while patients' functional status, informal caregivers' illness performance, and social support had a positive effect.

Consequences : soC

For the stroke patient

- incident rate of fatal or non fatal

- health care services: rehabilitation service needs, dissatisfaction with care at 12 months

- psychological status: depression, normal mood- Patients with a high SoC had low levels of anxiety,

For the informal care giver

- Psychological status: depression, anxiety, disappointment,

- marital level: marital satisfaction

- Social environmental level: social activities, work and study hours, quality of life.

- Caring level: caring burden, dissatisfaction with care recipient, dissatisfaction with performance as caregiver.

For the dyad

-SoC mediated the relationship between perceived stress and depression in stroke, as well as informal caregivers' social support and care burden and emotional state, and patients' functional status.

-Well-being

-perception of rehabilitation needs.

Barriers and facilitators to navigating and accessing care following a stroke

Challenges post-discharge : difficulties transitioning, lack of health education, drastic change in routines

Barriers to community care : lack of appropriate services, healthcare professionals with a negative attitude

Facilitators to effective navigation: individuals seek guidance, HCP provide educational knowledge

What are the theoretical and empirical knowledge of the concepts (dignity and sense of coherence) to enhance one's understanding of the experiences of families living with chronic illness?

1. Hospital Discharges and Fragmented Care

After a hospital discharge, stroke survivors often face fragmented care. Many report that they leave the

hospital with insufficient information about their ongoing care needs, rehabilitation, or follow-up

services.

2. Communication Gaps Between Care Providers

In a situation where stroke survivors are transitioning from acute care to outpatient or home care, a lack

of communication between healthcare teams

3. Caregiver Burnout

A common example is a family member of an elderly stroke survivor who is responsible for managing not

only the patient's immediate needs (medications, mobility assistance, etc.)

4. Financial and Employment Strain

Caregiving often leads to financial strain, especially when the caregiver has to reduce working hours or

leave their job to provide full-time care