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CARE CAMPUS Project

Caregiving and Ageing Reimagined for Europe

MODULE: #6 “Care for carers”WEEK 1:

Learning sequencesA Learning sequence comprises learning activities and can be one of following:

a video lecture (our own). Add the name of the presenter to this field. External link to another film on Youtube a page (html) with instructions for an activity or embedded content eg Zeemap a common problem (ie true/false, multiple choice, drop-down, blank, numerical input, text input advanced problem (word cloud, image mapped input, problem with Adaptive hint, Problem with Python evaluated content) a poll Peer assessed open response Instructions for discussion forum

Save documents by week. Week 1 etc as separate documents.

TeaserHello everyone, my name is Dr. Helen Villars and I am a geriatric doctor from the Toulouse University Hospital, in the south of France.

Welcome to our course “Care for carers”. This course is part of CARE Campus and is about the role of the carers and the impact of caring on their wellbeing, health and quality of life.

The aim of this course is to provide you with key notions to understand your role, to identify your needs to manage your time as well as find help amongst your local resources. It also aims to improve your feeling of competence and skills to cope with difficult situations.

The carer role can lead to positive feeling, accomplishment and self-worth, it can however also lead to stress and fatigue.

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Through our 4 sections course, you will acquire information on how to prevent these symptoms or lessen them. Through carer’s testimonies, experts interviews and documentation you will acquire knowledge on this role and relationship, on support available such as family associations support, general practitioners role, respite care, and psychoeducational programs. This could help you embrace your role in your daily living.

We will also provide the framework to help you make decision about some of the difficult choices you might need to take as a carer regarding issues such as housing, medication and end of life decision.

We hope this course will help you during your journey of being a carer and we hope that you will join us for this course online!

A bientôt!

WEEK 1Learning Outcomes:

At the end of this Lesson you should be able to… LO1: Understand the definition of carer LO2: Know and understand the concepts of Autonomy, Dependency and Disability LO 3: Recognise the care relationship and identify yourself as a carer LO 4: List the motivations that can bring people to engaged in this unique type of relation LO 5: List the tasks of the carer LO 6: Describe the main aspects of the care relationship (including positives aspects), the change it can induces in the

initial relationship LO 7: Acquire knowledge about the population of carers in your country and across Europe (demography, groups

represented (gender gap, retired/active, countries specifics, landscape analysis data)

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WEEK 1Overview:

INTRODUCTIONLearning Activity Type

Description (video/html-page/problem type/discussion)

Content: Location of files

Permission to use ? Who owns?

Script or Page Text / Questions Text on Screen (film)

Images/Video/Slides /Content

Sequence 0 : Introduction

Video 1 “General Introduction”

Hello everyone, my name is Dr. Helen Villars and I am a geriatric doctor from the Toulouse University Hospital, in the south of France.

Welcome to our course “Care for carers”. This course is part of CARE Campus and is about the role of the carers and the impact of caring on their wellbeing, health and quality of life.

The content was created in partnership with Ms Sylvia Nissim from the Kensington and Chelsea Social Council based in West London and her team of local Carers Associations and Network of charities, and also with the help of all the academic partners of the care Campus project. I work with a team of Medical Doctors, Geriatric and Neurologist specialists, Public Health researchers, and other health professionals that you will get to hear in this course as well as experts from academic partners of the project.

The course is divided in four sections. Every section includes learning activities, carers ’testimonies and expert’s interviews. You will also find additional information and the end of each

Logos?

Pictures ( *)

To be recorded Outside in “Toulouse La Grave” by Hélène (end of September)

Toulouse Hospital

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section to go further on the topic if you wish.

The course in its entirety should take around 6 hours to complete or 4 weeks if you spend an hour and a half per week on it.

In the first section, you will acquire knowledge on the characteristics of the care relationship, the tasks of the carer, your motivations and your needs.

In the second section, we will talk about the consequences of the carer role on physical and mental health and the signs of chronic stress and exhaustion

In the third section, you will acquire information on how to preserve your health, your wellbeing, to improve your feeling of competency to manage your time and to cope with difficult situations.

In the last section, we will provide you knowledge about health care system organisations, the rights and concerns of the carers, and tips and tools to build your own resources pack. Finally, we will look at ways to maintain the carer role after the older person has moved to a nursing home and to prepare for the care relationship in end of life.

In every section, we have chosen learning activities, very brief and achievable because we know most of you don’t have a lot of time, and also short assessments activities. Those activities are of course anonymous.

You will also find additional information (scientific documentation, other material, websites, brochures etc…) at the

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end of each section. We hope that this course will help you during your journey as a carer and we hope that you will join us for this course online!

A bientôt!

Video 2 “Module 1 overview”

We will now start our first section of the course. This week you will discover what it means to be a Carer in practice. Through a range of testimonies of carers and expert advice, we will talk about the nature of this unique relationship, the tasks of a carer, your motivations and your needs.

We hope this should allow you to better understand the care relationship and the importance of care in our societies.

logos Pictures (list Jeremy)

L01/L02Learning Activity Type



Permission to use? Who owns?



Sequence 1: Definition

Video 1“carers testimonies on being a carer”

« Before we start talking about autonomy, dependency and disability, to better understand the concept of care, let’s hear from Carers about what it is to be a Carer. »

«What does being a Carer means to you? In 2 or 3 words? »

Keys words (cloud?)

-help-care-love-affection-stress

Audio recordings mix of informal and professional carers : already recorded in June in Toulousewaiting for London (record on the 9th October)(and

Toulouse,

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Audio recordings

“As you have heard from carers themselves, being a carer means “being there”, “helping”, “lack of time”, “fatigue” (transcription in progress+ add testimonies from London)

“Indeed people taking care of loved ones whether because of an illness or a disability are called carers. This terminology originated with medical and socio-medical professionals and not with carers themselves at the start. We will cover how this term came to be selected and what it encompasses. »

“Listen here to Professor Sandrine Andrieu, Leader of the French Geriatric Society”

-lack of time-respite-fatigue-loneliness-hopelessness

Stockholm?)

Vidéo 2“Expert point of view Pr Andrieu”

“Carers or carers, an informal carer is a person of any age who provides unpaid support to a partner, relative, friend or neighbor who couldn’t get by without their help. This could be due to old age, frailty, disability, a serious health condition, mental ill health or substance misuse. An employed carer is a care worker or care assistant who is paid to provide care. This can be confusing, as some carers receive statutory payments (for example Carer’s Allowance) or a direct payment for their caring role. However, even when carers are in receipt of such payments, they are still considered to be carers. Even if carers play an important role in societies they often do not

Pr Andrieu InterviewOctober or to be read by Sylvia?

Bibliothèque Faculty of Medicine Toulouse

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recognize themselves as such. This word has been used initially by Health and Medico social professional. As previously mentioned by family carers it is “restrictive” but it is now the validated terminology used to identify these persons In France, the Carers definition evolved from Family carer (but that was too restrictive re other loved ones), to natural carers (but that included a moral obligation) to informal carers (but that diminished the role) to now finally take of caregiving relatives or simply carer. The help the carer provides can be total or partial, and can be of many type as you will learn it the following sections”

Assessment activity

The word “ carer” or “caregiver” is revendicated by carers themselves□ True □ False

The same word “ carer” is used for professional and non professional persons?□ True □ False

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L02Learning Activity Type






Opening activity

Think about why an older person may need help?What means autonomy to you?Do you know the difference between disability and dependence for physicians?

What is autonomy?What is disability?What is dependency?

Pictures (*) music

"To better understand what it means to be a Carer, you have to first understand the following concepts of Autonomy, Dependency and Disability” Listen to Pr NOUHRASHEMI

Pictures (*) Toulouse Hospital

Video 2“Interview Pr Nourhashemi”

" Autonomy is defined as the capacity to self-govern. It requires the capacity to judge, or choose, and predict as well as the freedom to act on it, accept or refuse it according to your own decision. A person’s autonomy is both about capacity and freedom, it’s about free will. So the autonomy concept isn’t strictly opposed to the Dependency concept, as in – in need of support. Dependency is the partial or total impossibility for a person to execute daily activities, whether

Interview of Pr Nourhashemi recorded week 1 October

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they be physical, psychological or social without help or support and to adapt to their environment. These two notions complement each other. » Disability is an impairment that may be cognitive, developmental, intellectual, mental, physical, sensory, or some combination of these. It substantially affects a person's life activities and may be present from birth or occur during a person's lifetime. People can be affected simultaneously by a disability and a loss of autonomy. The complexity of the care and support of these people can sometimes be an intricate issue. It is important to note, as we will cover this topic in week 3, that most of the situations with age related dependencies in Europe are linked with neurodegenerative diseases such as Alzheimer's

Assessment activity

A disabled person can be autonomous in daily living □ True □ False

A dependent person car be in a relationship of dependency because of one or several disabilities □ True □ False

L03/L04Learning Activity Type




Script or Page Text / Questions Text on Images/

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Screen (film)

Video/Slides /Content

Sequence 2: The care relation ship

Video 1“The care relation characteristics”

What is the caring relationship? And what is the definition of the carer’s role?

The word “relationship” highlights the link with another person. As we will discover through carer’s testimonies, it is often a previous relationship that leads a person into becoming a carer (Care, Love, Friendship, etc.) The Caring relationship translates into physical, material and moral support. This relationship is executed by a person with a caring role. Indeed, a role is defined a series of actions and behaviours that a person executes in a given situation depending on their position in the familial, private and social sphere. The relationship and the role are two different things. These behaviours depend on the person’s beliefs, their values but also their goals and societal, moral and cultural norms of their surrounding environment and times. For example, the moral obligation to take care of an aging parent changed a lot throughout the ages and is still evolving in our current culture.The variety of roles of carers has been described in the first Module of the MOOC of care campus, for example companion role, home help, and personal care. The place of the carer between health care professional, that is different between countries has already been described in course n°1.

We will talk now about the carer’s motivations. But before, we need to emphasize that this can be a formal and established employed role too. We will

Pictures (*) pictures of caregiving? , family portraits?

Recorded: https://vimeo.com/291053062/77e563b418

re-reference the characteristics of a Carer from Course 1 week #1 and Course #2 week #1.

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see in the following section the motivation of carers.

In such a unique relationship, there are personal qualities that a carer whether formal or informal, should cultivate, as we mentioned in the section one of course number two for example flexibility, patience, empathy, sensitivity. The two members of this relationship are indeed not at the same level since one of them is vulnerable and dependent.

Reflective activity

“Through the small quiz below, we would like you to take position as a carer, recognize your caring relationship and tell us how you want to keep engaging as such:

This quiz is taken out of a local support group in Vaud, Switzerland (appendix)

In my life on top of being a carer I am a…. ?□Spouse □Son, Daughter □Mother, Father □Son-daughter in law □Friend, Neighbour □ other

I have been helping and supporting a person in need of care for :□1 to 6 month □6 months to a year □1 to 5 years □ more than 5 years

I can dedicate time for my loved one :□occasionally □every week □everyday □all my free time

QUIZZ /boxes

Self assessment form to be completed with Swiss form.

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Condition for my caring relationship are suitable and acceptable ?□not at all□no, not always□in part□yes, most of the time□perfectly







Sequence 2: care relationship and carer’s role

Video 2 “carers motivations”

« It is essential to understand what brought you into a caring relationship and your motivations."« Through the following testimonies from X Y and Z we will explore together various reasons leading a person to become a carer.”

« What are the reasons that lead you to become a carer? "

“Listen to Mrs X psychologist point of view:

“I think it is the « sense of duty » that is the main source of motivation. People have the feeling of a moral obligation to give back what has been given,

A word cloud again, coming up with music in the background and pictures

Key words

Video testimonies (France, already recorded, UK and Sweden?)

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for a lifetime, whether as a spouse or a child. What comes out is that they feel a natural obligation to be there. Each family’s history is different of course, but most of the time these feelings are present”

+Testimonies in London

Voice over “You have heard through testimonies, some of the known motivation for the caring relationship” We can also mention”

Love and affection Friendship Gratitude Obligation Respect of a promise made Moral duty Challenge Religious convictions Financial need I never asked myself I don’t know Other feelings ….

Notion of “designated carer”"Sometimes the family carer is a" designated "carer, that is, other family members think it is" normal "for him / her to assume this caregiving role. Sometimes the patient is the one selecting the person to care for them. This process has multiple reasons. It can be cultural, with gender inequalities in domestic work and family obligations, the tasks are more naturally assigned to women in our

A word cloud again, coming up with music in the background and picturesKey words

Representative photos of these things that would be very doable. Pictures (Jeremy)

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societies. It can also be related to intra-family relations and the family's life history with role changes from childhood to adulthood and the arrival of parental dependency. An "assigned" or "designated" carer position is difficult to hold, the feeling of loneliness is often great because of a lack of support. The accumulation of an important objective load (in domestic tasks, presence, care) and an absent decision-making power (ie held by another member of the family (decision on change of place of residence, entry into an institution, etc.) is also a source of tension for the carer. This can sometimes be the case for carer by marriage and stepchildren. "

Regarding professional carers, many reasons can lead a person to direct his or her professional life towards “care” to be developed

Reflective Activity

"You have now seen some of the motivations that lead to caring and can attest to how diverse they can be. It is important to consider your motivations and think about them. See if your reasons have been listed or add yours under the discussion panel.

Music (Anne-Liese)

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Video 3 “The Tasks”

Voice recorded

But what are the carers doing?

Lunch and dinner for the person you care for (grocery shopping and cooking)

Cleaning and clearing the home (cleaning and laundry activities)

Basic physical care (washing, dressing, help with mobility, support with feeding, etc.)

Support with budget needs Support with administrative

needs Support with medical care

and treatment Moral support Social relationship Leisure and pleasure activity Help with time management Support with project

management Others that these may be

different in different settings and circumstances. ……..

A series of domestic task are listed above to which we should add pictures for:

Some pictograms will be kept some deleted.Dog, washing machine and iron will go, cooker for cooking, shopping basket for shopping, sweeper, vacum cleaner and bin can go in one for cleaning. Need new ones for dressing, body washing, walking, bathroom, eating, drugs and pills.

Pictograms in progress : model :

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Reflective Activity

List other activities you have to cover as a carer, take 5 minutes to complete the list with other activities you are regularly asked to contribute as a carer.

Reflective Activity

"All those activities and tasks are of course very time consuming and take in average 2 hours per day

Please tick here the activities you deliver in to support your loved ones. (Draft a tick box list with the pictures/logos)

Other reflective questions could include:Every day I take care to do a/b/c ect

How many hours per week do you spend in carers tasks:I spend X or Y hours per day or per week in my caring activities.

Check boxes with pictograms

Music (Anne-Liese list)

L06

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Learning Activity Type






Opening activity

Have you ever seen a movie or read a book on “being a carer”?

music

Sequence 3: Emotional consequences of the care relationship

Video 1 “The care relation by professionals”

“Feelings and motivation leading to care are complex and various but taking care of somebody vulnerable always involves feelings. Living with or seeing regularly somebody who is dependent will affect you and can lead to feelings of helplessness, sadness and anxiety. We will see in the next section how this can sometimes put you at risk for distress and exhaustion. On the other hand, caring can also bring you joy, pleasure and feeling of accomplishment”.

“Those feeling, negative or positive ones, may induce a change in the initial relationship between the two person, but also, in case of a family carer, they can also change the role of the person in the family. This phenomenon is often the source of the emotional strain and sometimes true moral suffering”

This has been often illustrated in literature, music and cinema

Films posters :

“Away from her”“Still Alice”

Books?

« We’re not here to disappear » Olivia Rosenthal

« The taste of Apple seeds » Katharina Hagena

« The Old King in his Exil » Arno Geiger

Anneliese article?

Ted X ?

?

Video 2 Listen to a psychologist point of vue:

"Being a carer for me means first and foremost to be devoted, because it‘s about being always there for the other person and setting our own personal life aside in order to support the person dealing with their condition".

Psychologist interview already recorded

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We can even observe that the notion of « self-sacrifice » is sometimes present in testimonies. Being a carer also means a certain amount of suffering for example a feeling of isolation or loneliness. Even when the rest of the family is there, the pair may live cut off from others, in a "bubble", from which they cannot feel the comfort being given to them. I feel, it is a difficult role to play. Moreover, carers are often reduced to this role and put in a box in which they don’t want to stay. Identifying them and thinking of them inside of that box is our only way to help them, professionally and as a society. At least, the tag on the box exists which is already something!”

Reflective activity

Think about the change induces in the initial relation buy your role of carer







Sequence 4: “Carers in Europe”

Video 1” Carers in Europe”

“So, a carer is anyone who cares, paid or unpaid, in part or completely, for a friend or family member who, due to illness, disability, a mental health problem or an addiction, cannot cope with activities of daily living without their support. But WHO are

Already recorded

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the carers in Europe ?

Video 2 “Carers in Europe”

« In Europe, as you have learned in Module 1 In France, for example, the carer will most often be a woman (2/3 of cases) split into two age groups, over 65’ often the older adult’s spouse and 55-65 years old, often their daughter. Active Carers, meaning those who are still working represent a third of the Carers. Out of those Active Carers more than half have had to reduce their working hours to part time working. The mean for time spent in caring is 35 hours per week”. "The role of a carer is not only a private issue, it also needs to be considered at a societal level. Being a Carer means leading a double life, one with the person you care for and the other with the rest of society. It is important to note that most of the situations with age related dependencies in Europe are linked with neurodegenerative diseases such as Alzheimer's.

European map?You could click on a country and find out more about local stats.

Diagrams and data of other modules or landscape analysis?

Landscape analysis, link with OXFORD courses

WHO report (kibox)

Video 2 bis The notion of gender inequalities

It is a striking fact that women continue to provide a larger amount of care than men across all societies, especially in respect of unpaid care (United Nations Development Programme (UNDP) 1995, 2007; Budlender forthcoming). More striking

GENDER and CARE Overview Reporthttp://www.bridge.ids.ac.uk/sites/bridge.ids.ac.uk/files/reports/CEP_Care_OR.pdf

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still is that these inequalities persist in spite of marked increases in female participation in the labour force in almost every region of the world1 (Elson 1999, 2005; Kabeer 2007, 2008; Molyneux 2007b; Pearson, in Cornwall et al. 2007).

Providing care can be both a source of fulfilment and a terrible burden. For women and girls in particular,their socially prescribed role as carers can undermine their rights and limit their opportunities, capabilitiesand choices – posing a fundamental obstacle to gender equality and well-being.

"There are policies in place already, such as the European directive, which aims to allow a better reconciliation between work and private life by fighting against gender inequalities in the domestic sphere. The purpose is to empower the family carer. But are the policies aimed at promoting work-life balance for carers, who are currently mainly women, really allowing men to reconcile personal and professional life, and promoting engagement in that type of activities traditionally considered more feminine?

Should we develop this more?

Pictures of gender equalitiesClick Europeen commission texthttp://www.ey2014.eu/http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-%2f%2fEP%2f%2fTEXT%2bREPORT%2bA8-2016-0253%2b0%2bDOC%2bXML%2bV0%2f%2fEN&language=EN

Reflective activity

Click on your country and see the data about carer. Rapport de la DREES FranceEach country (who are

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the carers)

Assessment activities

The carer’s role is mostly supported by women in Europe? □True □False

One of the goal of actual European public health policies on aging is to encourage a better work life balance for carers □True □False

ConclusionLearning Activity Type






Sequence 5 “Conclusion

“Video 1 We hope you have recognized your situation in this module, and found ideas to move forward in your care relationship and continue your journey.

You can find further information and documentation in the link X or Y.

In the next module we will talk about the consequences of the carer’s role on health and

Logos? Faculty of Medicine of Toulouse Jules Guesde?

Toulouse Hospital

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wellbeing. We will envisage how your own culture and beliefs shapes the way you provide care and go further on the concepts of Mental Workload and Burden of care (subjective and objective)

Before, we ask you please to full fill the short following questionnaire.

Assessment activity

The moral obligation to take care a dependant person is the most important reason mentioned by family carers □True □False

The care relationship can induce a change in the initial relationship for family carers □True □False

The care relationship is emotionally demanding for professional carers □True □False

There is a lack of carers in general in Europe □True □False

Paid and unpaid carers or mostly women in Europe □True □False

□True □False

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