Week 8: Carers in Society Flashcards
What are lay/informal carers?
People living in the community that are not paid for their role (although some may be entitled to a carers benefit)
Usually a close relative or friend and typically do not have any formal health carer qualifications
What kind of things do informal carers do?
They assist with activities of daily living, give emotional support, may be an advocate for the care recipients’ formal care, may manage finances
What are primary carers?
These are the people that are the main providers of care
What are secondary carers?
These people assist or support primary carers in their role
Look after the care recipient as well in some cases but to a lesser extent than the primary carer
What is the typical employment status of carers?
They are typically not employed as they are too involved in the caring role or may already be within the retirement age group before taking on the caring role
How financially disadvantaged are carers?
The weekly median income is 42% greater than the income of carers
Are there any gender differences in informal care?
Most carers are female (71.8%)
What is the average age of an informal carer?
54 years old
How many carers provide 40+ hours of unpaid work a week?
1/3 of carers do
How many carers provide at least 20 hours a week?
51% - more than half
What are sandwich carers?
Related to the average carer age being 54 years - these people are often still looking after their own families and are sandwiched between two significant care-giving roles and can often feel torn or overwhelmed
What are some of the responsibilities of informal carers?
Personal care Mobility Meal prep - eating and drinking Safety Communication and social participation Advocacy and representation Coordination of services and supports
Why is it important for carers to adapt?
As the recipients’ disease progresses, new challenges arise so need to be able to adapt to these
What are the needs of carers?
Financial
Physical
Mental health
What are the financial needs of carers?
Loss of income, cost of care services, pensioners
What are the physical needs of carers?
Their own health can deteriorate as they put themselves last
May need practical support
May need respite
What are the mental health needs of carers?
May experience loneliness and isolation, grief and loss (anticipation of loss)
They are also at a higher risk of psychological disorders because of the enormous strain they are under
What may a carer lose in this caring journey?
Social contacts
Leisure activities
Sense of self - identity becomes solely carer
Free time
Conversation - can crave this especially if the person they care for has a cognitive disability
What is used to identify pressures and coping in carers?
The carer stress test
Items such as ‘i cry everyday’ and a likert scale are presented to the carer - if their response to one or more of the statements is usually true or often true it may be time to look for new ways to cope of seek additional support
What is used to determine caregiving burden?
The ZBI (Zarat burden inventory) - the higher the individual endorses the items, the greater the caregiving burden
What are the items in the ZBI (3)
Are you afraid of what the future holds for your relative?
Do you feel your health has suffered because of your involvement with your relative?
Do you feel you have los control of your life since your relatives illness?
What is the personal wellbeing index and what has been found with carers in relation to it?
Assesses level of satisfaction across 7 domains of life (health, personal relationships, safety, standard of living, achieving in life, community connectedness and future security)
- high scores = high levels of wellbeing
- Most carers fell below the normal range
What are some positive aspects that come out of caring? especially for dementia carers?
Feeling:
- more useful
- good about self
- needed
- appreciated
- important
- strong and confident
Greater appreciation for life and have strengthened relationships
What are positive aspects of caregiving associated with?
lower depression, lower burden and better self assessed health
How are positive aspects to care giving protective?
It may assist people in coping with grief once the care recipient has passed away
is associated with lower levels of post loss depression and grief
What do dementia carers have higher risks of when compared to non-carers or carers of people with other illnesses?
Have higher rates of depression
More unmet needs
Poorer quality of life and health
What are the long term correlates of care giving?
Psychological distress Perceived stress and burden Chronic fatigue Lowered immune system Drug and alcohol use Depression Mortality
How many dementia carers report the contemplation of suicide more than once a year?
1 in 4
with 1/3 reporting they will likely attempt again in the future
Indicates huge amount of burden
What percentage of dementia carers report symptoms of significant distress?
> 50%
Why are Tasmanian carers at high risk?
There is a high dementia burden relative to nationality
Very isolated here
High socio-economic disadvantage
Second highest suicide rate nationally
Are indigenous or non-indigenous people more likely to be caregivers and why?
Indigenous - due to health disparities
12.5% vs. 10.5%
What is the median age of indigenous carers?
37 years
What percentage of carers in Australia are under the age of 25?
10%
What is the non-patient centred role that young people typically take on?
Activities such as household chores, meal prep, organising transport and appointments
As well as looking after other family members such as younger siblings
Often conceal condition of their relative from others and do not want to be identified as a carer
How many hours do young carers put in?
10-20 hours a week as well as still attending their own occupational or educational responsibilities
Social experiences can be limited and often want to live a normal life
- Grow up way too fast and miss out of their childhood years
In which ways do younger carers face developmental challenges that aren’t common to older carers?
They typically are undertaking simultaneous educational study or training while caring
Spend less time in school or doing homework than peers
Because of this, may face difficulties in skilled employment and or future academic based endeavours
They have lower employment rates than non-caregiving peers
Why are carers important if they aren’t the patient?
They help to reduce the burden on the health care sector and the economy
If they aren’t cared for they will need care themselves
The carers and care recipients journey are strongly intertwined
(Caregiver burden predicts less desirable out comes (e.g.,premature nursing home placement & mortality in especially dementia patients)
Explain the important effects of social engagement and support for dementia caregivers?
Studies have found that dementia carers benefit from satisfying leisure activities, especially if these activities are social. Engaging in social activities and self-help groups buffered the negative effects of caregiving
What is the overall idea of respite and what is it?
The idea is to give the carer a break - but important for the recipient too!!
A form of temporary care
What is the overall idea of respite and what is it?
The idea is to give the carer a break
A form of temporary care that can be given in the home or externally
How long is respite?
Can be short term (externally or in the home) - couple of hours or days
Or long term (externally) - a couple of months
What kind of services are provided in respite?
Home based care, skilled nursing, home health, residential programs, companionship
What kinds of barriers are there to seeking help?
Practical
Psychological
Cultural/social
What are some practical barriers to seeking help?
Creating time for self means - having to arrange respite
Money
Lack of services
Nature of care-recipients needs
What are some psychological barriers to seeking help?
Focusing on others instead of self Burnout or depression - no energy/hope No time for self reflection Guilt if they aren't in role 24/7 Trust - not wanting to relinquish control (respite)
What are some cultural/social barriers to seeking help?
Duty, expectations, language barriers, disadvantage
What is the biggest barrier to reaching carers?
It is a jargon word!!
Some people do not identify as being a carer
‘this is just what i do’
What should the term carer be reworded to?
Are you looking after somebody close to you [with a disability, who needs help with daily living, who is coping with a chronic illness or a mental illness]
Psychological intervention often focuses on the patient with health problem of disability - but what about the carer?
There is emerging evidence towards the benefit of interventions for some carers well-being
Is there any carer support for people with diabetes?
Relatively few.
Often the goal is to include carer in order to improve diabetic self management
Interventions for caregivers of people living with cancer?
Most trials delivered interventions to caregiver‐patient dyads predominantly spousal dyads
Compared to usual care, psychosocial interventions may improve slightly the caregiver quality of life immediately Post intervention
But little to no effect on care giver quality of life at 12 months post intervention
How do we help carers get access to services?
studies that include ethnic minority groups & assess how their needs may differ from mainstream population
improved modes of information provision to carers to improve knowledge of what services are available
training of health care providers on communication skills to recognise carer role, recognise younger carers and effectively communicate end‐of‐life issues
What design should interventions be?
Participatory (life in society) action (experience) research (mind, knowledge)
Programs that adopt participatory action research tend to be more culturally responsive to local contexts and foster a culturally safe environment for program participants
What are the strategic priorities of international alliance of carer organisations?
- Increase awareness and recognition of carers
- Enhance understanding of the impact of caring
- Create a global strategy and commitment to action to carers
