Assess and respond to changes in the care relationship

Submitted by sylvia.wong@up… on Fri, 07/08/2022 - 16:40
Sub Topics

The relationship between the care for the person in care, the carer and the family members do not remain static. Change can be a result of external factors or internal factors – accommodation might change; family dynamics change; relationships change; people change.

Change can occur for a variety of reasons:

  • Moving to a new stage of life
  • Family member composition alters
  • New and different care support and approaches are identified
  • The ability of the carer to continue to provide care
  • The physical and emotional health of the person in care worsens or improves.

It is important as a support worker to be aware of any changes and be in a position to be able to mitigate any risks and:

  • offer new or different kinds of support
  • help carers and the person in care focus on the positive aspects of any transition.

Life transitions are periods in a person’s life where a change and/or adjustment occurs that impacts their life in a significant manner. It usually occurs between two relatively stable points in time in the person’s life (Schumacher 1999).

Every person experiences transition whether planned or unplanned, big or small. Transitions can involve exciting changes such as a new job or addition to a family. They can cause distress such as the loss of a loved one or a deterioration in their health (Womack 2021). Often these transitions will make us stop and re-examine the present sense of who we are.

Transition can affect emotional state and moods, ability to work or care for another person and social interactions.

The transition from one stage to another is not time-dependent nor occurs at any specific age. Each person may experience different transitions throughout their life. The transition from one stage to another is not without some risk to self or others who are a part of the transition.

Some common transitions include:

  • Reaching a significant age - 30, 40, 50, 60 etc
  • Getting married
  • Becoming a parent
  • Leaving educational institutions (university; school)
  • Changing/losing a job/made redundant
  • Becoming ill or disabled
  • Experiencing bereavement
  • Retiring.

Transition in late life

Life transitions for the aged may include:

  • A family member moving from pre-caring to care
  • Family member or friend taking on a caring role
  • Engagement in formal service providers such as home care
  • The person needing care enters into a day or overnight respite or moved from home to full-time, supported residential care
  • People need care needing end-of-life or palliative care.

Life transition impacts positively or negatively on people’s lives:

Positive  Negative

Greater autonomy and control over life decisions and activities

Increased financial and personal independence

Sharing of responsibilities and tasks

Improved self-esteem

Satisfaction with a time of life and activities undertaking

Less time for recreation as the focus is on others and earning a living

Demands from other persons, family or work increases

The cost of activities and lifestyle items increase

There may be an increase in worry about others you are responsible for or relate to

There may be an onset of depression, guilt, anxiety or distress immediately or on a daily basis after a death, incapacity or move

A sense of self is often challenged and the questions asked ‘Who am I now?’ ‘Do I like who I have become?’

Disruptive behaviours may result when moved from familiar surroundings where cognitive functions are impaired

Sense of loss and increased isolation when moved into a residential home as cut ties with the community
Activity – Read

You might like to read a fact sheet about transitioning into aged care for family, friends and carers available from the Australian Centre for Grief and Bereavement website.

The  fact sheet provides information about thoughts and emotions that arise when people have to adapt to a major life transition such as and older person transitioning into a residential aged care facility.

So, what might be some of the positive (healthy) or negative (unhealthy) processes of transition for the older person.

A carer holds the shoulder of an elder man
  Positive Negative
Redefining meaning of transition The elderly person actively engages in exploring the transition with family, carer and friends and new meanings for the transition are discovered. The process to create meaning is complex and people need time to work through all the implications. There is resistance by family, care and elderly person to the redefining meaning of transition. There is an attempt to use the old definitions to a new situation.
Modifying expectations Expectations of what the elderly person has about themselves, their family and friends, the community and the future is often questioned during the transition.
Previous expectations are modified and replaced with new, realistic expectations for the new situation.
The elderly person and carer and/or family maintain previous expectations. They anticipate a future that is unrealistic and generally will not occur.
Restructuring life routines Routines are restructured to suit the new situation and allow the elderly person to regain the sense their life is predictable and manageable They may even see the routine as to be enjoyed.

The elderly person clings to old routines even if they do not work in the new situation.

Where an environment does not have a sustained routine, the elderly person’s life may become unpredictable and disorganised resulting in feelings of loss and emptiness.
Developing new knowledge and skills Over time the elderly person's knowledge and skills will closely mould to and fit the new situation.

The elderly person ignores or avoids new knowledge and skills and the opportunities to develop new skills are not taken up.

Current skills and knowledge are no longer applicable or useful for the new situation.
Continuities of some parts of life remain Not all parts of the elderly person’s life or family changes. Whatever continuity can be maintained related to identity, relationships and environment is facilitated. There is lack of awareness by elderly person and carer/family members of the possibility of continuity, and disruption occurs where it does not need to. Change that could be avoided occurs regardless of what is done.
Loss associated with transition Although the elderly person may experience loss in some form, the gain is that there are opportunity for new choices. The elderly person is open to exploring these and/or seeking out and creating new experiences. The elderly person or others in the environment limit the choices. This means the family and elderly person are passive to new opportunities and these are passed over without any exploration or discovery.
Finding opportunities for personal growth The elderly person embraces growth and self awareness. Personal development is achieved and new relationships may be formed. The elderly person rejects the opportunities for growth. The emergence of self does not occur.

As a support worker, you will need to understand the concept of life transitions and how they positively or negatively affect the people you work with.

Activity – Case study and question
Case study
Senior woman assisting for dress by carer

Simone has lived in her house with her husband and children since she was married. Her husband died of a heart attack in his 60s. Since then, she has looked after herself in the house. At 92, she has become very frail and has had the odd fall, although nothing has been broken.

The family has arranged for you as a support worker to provide care for Simone on a daily basis as her family do not want her to go into residential care. They believe as she has a pendant alarm and one of the family visits her at least once a day she is fine. They think they should and can look after her needs.

The arrangement is you come to the house in the morning, spend about an hour there and then return just after the evening meal to settle her into bedtime routine. Sometimes the family visits at the same time and Simone is left on her own for long periods of time. Simone has confided in you she is a bit afraid of living alone.

Question

What are the emotional reactions of the carers (family members) and the person needing care in this situation?

What might you do to transition Simone to the next phase of her life and help the carers and Simone to adapt?

Post your response online or discuss with your trainer or colleague

The nature of the care relationship between the person needing care and the carer or family member can be based on the reasons they are involved with the care:

Carer and needing care relationship
  • Practicality - They believe they are the best to provide care, have the appropriate skills and time out of those people available to provide care
  • Moral duty - They have a duty to the person needing care or see it as the right thing to do in the circumstances
  • Natural extension - Care is undertaken as a natural extension of the previous relationship with the person. It seen as a privelege and out of love not as an imposed duty.

Sometimes, the relationship between the carer and the person receiving care changes. This may be as a result of the capacity of the carer to provide care and support. The carer may:

  • not be able to look after the person in short term or long term as a result of experiencing emotional or physical illness themselves
  • experience changes in relationships with other family members such as divorce, a child leaving home, additions to the family
  • have other family commitments such as child trauma (diagnosed with a medical issue needing dedicated care or an operation)
  • have a career change they wish to pursue requiring different housing or living location
  • experience financial difficulties.

These circumstances may necessitate some additional short-term support or longer-term consideration of alternative care arrangements for the person needing care.

Depending on the nature of the care provided by the carer, you as a support worker or the carer may need to: • undertake personal things with the person in the care you have not previously needed to do which may be uncomfortable or embarrassing for both parties in the first instance • spend more time with the person in care than before to meet their changed needs

The positive and negative effect of change in carer relationships

The change in the needs of the person and what has to be done to meet these needs can have a positive or negative effect on the carer, the family members and the person being cared for. It may change the perception of how the carer, family members or person in care see each other and change the relationship dynamic. The carer, family member or person in care may experience:

  • feelings of loss
  • uncertainty as to what the future might hold
  • uncertainty about the skills the carer may have or need to have and learn
  • additional stress
  • fear of the unknown or change
  • feelings of being useless
  • feelings of being controlled by other persons and losing independence
  • frustration in managing personality changes in the person they are caring for

As a support worker, you need to be alert to any changes in carer and person they care for the relationship. 

Injured man taking care by a woman

Change in caring relationships and transition to different situations or circumstances does not come without risk.

Any changes in relationships can result in either physical or psychological (or both) risk of harm to the person receiving care and support as well as the carer.

Sometimes it can lead to conflict in relationships with family as change means the weight of responsibility might now lie with one family member, and not spread across the family members. This can lead a carer feeling overwhelmed with the responsibility or not feeling able to have the skills or knowledge to manage the care.

Risks of change and transition may include:

Change Explanation Risk
Loss of support Support is important to the carer, family members and person needing care Withdrawal of support may mean loss of such things as funding, guidance, education and training essential to care that cannot be replaced.
Carer and family members lifestyle choices and activities may have to be sacrificed to provide necessary care for person in need.
High level and intensity of care
An increase in the intensity of care can in turn increase the burden on the carer or family member.
Lead to stress and/or resentment towards person caring for
Blame person for difficulty in providing care and the things they have to do to support them
Conflict with service providers Carer and/or family members may not agree with type of service being offered the person needing care If the relationship between service providers, carers and person in need of care breaks down, the ability to implement strength based approaches will break down
Conflict with family members Family members and carer do not see eye to eye regarding care for the person in need

Emotional distress from person in care observing family dynamics

Depression, blame and anger in carer or family member passed on to person needing care when undertaking care duties
Relationship breakdowns affecting delivery of effective services

Level of carer stress increases Caring can be difficult and time consuming. Stress can build up over time Tension between all people involved increases leading to arguments and disagreements about daily life and relationship
Stress can harm the carer relationship with person needing care and in worse case scenarios lead to abuse
Carer health Decline in carer health or new physical or emotional illness diagnosed may mean change in care or support e.g. move to residential care facility May limit the ability of carer to provide same level of care to person as they previously have or stop care altogether
Responsibilities may need to be realigned among carer and family members which in turn will affect how family member perceives carer and person needing care
Role in family dynamics Carer may have change in role where they are required to care for more than one dependent person Difficult to prioritise care for each person needing help
Difficult to provide sufficient and effective services to meet demands of all persons in need
Personality and behaviour of person needing care Personality and behaviour of person needing care changes as a result of change to physical or mental health.



 

Carer and family member may not be able to cope with changes leading to emotional outbursts, arguments and possible abuse

Person may need additional level of support requiring move to full time residential care which in turn may affect the carer and family members’ emotional state.
Emotions might include feelings of inadequacy; blaming others for change or blaming carer for not being able to cope with full time support and care

To best support the carer, family members and person in need during times of change, you as a support worker may need to:

  • Discuss the changes with the carer, family members and person in care to facilitate ongoing arrangements
  • Suggest ways of dealing with the changes such as personality changes in the person needing care. Carers and family members may find it hard not to argue, yell or work with the person if they have a personality change as a result of illness or additional physical needs. You might suggest it is more effective to take the emotional attachment out of the tasks and complete them more in line with a professional care worker
  • Take over some of the care duties and responsibilities or arrange for these to be supported by other service providers
  • Defer to your coordinator for advice on how to provide appropriate support to the current caring arrangements.

Positive effects of change

There are also positive effects of the change in care circumstances. The carer, family member or person needing care may:

  • Increase their self-confidence and self-esteem at meeting new challenges or the changes
  • Feel energised and excited about different things they will experience
  • Feel additional closeness and intimacy and create a bond that may have been previously missing.
Two assistants helping a disabled woman

Our personal experiences give us some indication of how change and transition to another period of our life can feel. This gives you the opportunity to be able to empathise with carers, family members and the person needing care during their periods of change and transition.

Change and transition is not easy for the carer, the family members and the person who may be in care or going to be cared for. It can be confronting and challenging especially when other factors are in the mix such as:

  • Planning for complex needs for the person in care
  • Managing financial issues to ensure adequate and appropriate emotional, mental and physical support is provided
  • Change occurs in a short period of time or suddenly not allowing the carer, family members or person needing care to absorb the change and work through it.

Keep in mind that it is not only the person who is being cared for that needs reassurance. The change to caring circumstances will also affect the carer and the family members – these people need feel they are actively involved in the change and transition, have control over their own lives during this time and can make decisions on how they will, and want to be involved.

Service delivery frameworks, philosophy and models

There are many different models and philosophies surrounding the care of people, including those entering the later years of life.

Some of these are explained here.

  Explanation Example Support worker interactions with carer and person being cared for
Service or system-centred approach (traditional approach)

This model is based on talking about the person and doing all the planning for them.

It is focused on diagnoses, deficits and labelling persons.

The way in which services are delivered to the person in need is based on what works best for the staff and the organisation. Staff are the experts and their professional judgement is used to determine the best approach

The authority and power is held by the professionals
Carers and persons needing care can become passive receivers of the care without any input

Problem-focused with support activities created and based on what works for people who have ‘that particular diagnosis or disease’

A treatment plan is often devised before even meeting the people it will be implemented for.
Professional language or jargon is used

Little interaction occurs other than to be informed of the type of care and support that will be provided.
Family members and carers are seen as peripheral and their input is not valued
Activity

Watch the video and read the article to find out more about the differences between the strength-based approach and the traditional system-based approach to care.

Watch

Watch Beth Mount Person Centered vs System Centered

  Explanation Example Support worker interactions with carer and person being cared for
Person centred approach

The professional knowledge of medical staff and carers knowledge is combined with the person needing care’s knowledge of their own values, feelings, body and capabilities

The person under care is at the centre of every decision or action

The person under care is an individual and unique with their own personal values, boundaries, beliefs and perspectives

The person’s needs and preferences in how they like to live their life are respected

The person’s knowledge they bring about their emotional and physical health and wellbeing is valued. If a person cannot share what they need, carers often can

The person is treated with dignity, compassion and respect

Given a choice of what to eat at meal times

Deciding on the clothes to wear for a shopping trip or for the day

Understanding their life experiences, present state and what goals they might want to meet in the future

Smile often

Wear name tag that can be seen

Ask how carer, family member, person needing care is feeling on the day (emotionally and physically)

Actively listen to the person under care, the carers and family members


Talk with the person, carer and family members not about them

Make sure the people involved have all the information needed to make informed choices

Activity

Read more about a person-centred approach from the following articles and fact sheet

Health Victoria

NSW Health. What is a person led approach?

NDP. Factsheet What is a person-centred approach

  Explanation Example Support worker interactions with carer and person being cared for
Strengths-based approach

A collaborative process between the person needing the care and the carer, family members and support workers supporting them

A holistic approach to well-being drawing on strengths of carer, family, person in care, communities

Acknowledges each person has a unique set of challenges and strengths

All people work together to determine outcomes that draw on the person needing care’s strengths and knowledge of self

Older people can manage change in a positive manner with support from carers, family members, support workers, medical professionals, care networks

Solution focused approach person encouraged to set goals before identifying strengths

Strengths-based approach a strength assessment is carried out before goals set

Focus on the strengths of person needing care and cares not deficits to counteract any difficulties

Enable links to resources such as institutions, groups, and associations that have something to give to the carer, family member or person needing care

Support worker explains choices to carers, family members and the person under the care and encourages people under care to make their own decisions and informed choices

Activity – Read 

Read more about strategies to implement strength-based approaches to care from the following articles

Kate Pascale and Associates. 2019. Embedding a strengths-based approach in client conversations.

SCIE. 2015. Care guidance on a strengths-based approach.

  Explanation Example Support worker interactions with carer and person being cared for
Active support

A person-centred approach that encompasses:

actively engaged each day whenever an opportunity

consistently approaches are structured and predictable enough so the person experiences comfort, continuity and a better ability to engage

engaged to be doing things, making decisions, spending time with others, making choices

a meaningful increase in competence and opportunity; stay connected socially to others; improve self-esteem by focusing on the needs, preferences and goals of the person

Choose own clothes

Choose what you want for breakfast

Carers and support workers work with them rather than helping them

Seek out chances for a person in care to express their wish for relationships an activities Ensure activities recommended are for the sake of engagement not just the sake of an activity

Activities must be meaningful to the person

All persons are included regardless of support needs

Commitment to make it happen from a person in care, carers and support worker

Involves listening, thinking together, coaching, sharing ideas, seeking feedback

Aim to understand what person in care wants and needs to live own life, personally defined

Activity – Watch and read

Watch a video and read more about active support strategies in action.

Watch

Watch NSW Government. Active support – A day in Fran’s life

Strategies to support carer, family and person in need of care

Frameworks, philosophies and models help inform the strategies that can be applied to support the carer, family and person needing care in routine visits, or times of change and transition.

There are a number of strategies that can be used to try to make the transition to care or more complex care less unsettling and more positive.

Strategies How does this strategy help and support the carer, family member and person needing care
Acknowledge anxiety

Carers, family members and the person needing care should not have to hide they are anxious about the change.

Recognise and confirm they have the right to feel anxious and have some fear or trepidation about the unknown future and what it holds.

Respect, accept and support the way and mechanisms they use to handle their anxiety.
Focus on the positives and talk to them about how they can participate in the change or how they can use it to their advantage. For example, if a person in need has to go into a residential care facility, it may release the carer/family members from full time care and enable them to follow or regain their social or work connections.

Support systems are maximised

Change and transition can mean more people are or will be involved in the person’s care and support.

This opens up a variety of strengths, abilities, knowledge, skills to ensure the person needing care has a structure in which they receive the best quality of care.
As a support worker you need to work out in conjunction with all persons concerned the best ways to make use of the support systems available to the person needing care. This may mean combining the skills of all people involved in supporting the person needing care to complement each other, as well as the skills and knowledge of the person themselves.

Look for opportunities for active involvement

Change and transition to the next phase in a person’s life can provide the opportunity for family members or carers to be actively involved in their support.

Consider in consultation with the carer, family members or person being cared for/or going to be cared for, how they can contribute or participate. Don’t just dictate or put your own personal views as the only way to move forward. This can be very off putting and you may find there is not much co-operation or building on relationships between the people involved.
Participation can be simple or complex. It may be simply reading to a person needing care because they can no longer do so; sitting listening to their favourite music; driving them to activities or appointment. Or it may be more complex where a carer or family member involves themselves together with the person who needs care with activities such as craft or social gatherings to play cards or in daily personal care needs.

Reassure the carer, family members and the person needing care

Reassuring the carer, family members and person needing care that their decisions about how to cope with changes and transition in their life is the best choice for them is important.

Change and transition brings with it a certain amount of uncertainty, even if the people involved are excited or looking forward to the change.
When talking and discussing the change with the carer, family members and person needing care keep a confident tone of voice and be positive about the activities and situation. Allow them to feel uncertain, but at the same time highlight the positive and new experiences they will encounter. Be careful of being condescending or talking down to the person in need, the carer or family member in your discussions or reassurance.

Strategies should be selected keeping in mind:

  • the current situation
  • the specific needs of the person in need, the carer and the family members at the time
  • the identified ongoing needs of the person needing care as a mental or physical illness deteriorate if this is what has caused the change in care
  • the characteristics of the carer, family members and person needing care
  • the wants and desires of the person needing care, the carer and family members
  • the cognitive and physical needs of the person requiring care 
  • any cultural or linguistic issues.

Another strategy to use to maximise a positive transition to the next stage of life for the person needing care, the carer and the family members is to follow a number of steps to an end result.

Any strategies and actions should be agreed to before being implemented by:

  • the carer
  • family members (where appropriate) and
  • person needing care (if able)

As a support worker the strategies you employ should focus on promoting positive and respectful relationships with the carer, family members and the person needing care.

You will need to approach each situation or circumstance in a different way – each carer, family member and person needing care is different. No two situations will be totally the same, so no two strategies will be the same either.

Activity – Discussion

Discuss with a colleague or your trainer the strategy you might use when working with an elderly carer from an Aboriginal background who is looking after a friend of around the same age, compared to working with a carer who is mid 30s, holds down a high powered job and is looking after her mother who has early onset of dementia.

Part of your role as support worker is to:

  • Identify and help address the risks associated with change
  • Identify the positive aspects of change
  • Support the carer, family members and person in need of care to use strategies to manage the change.
Activity – Case study and discussion
Case Study
An elder looking at the city with carer behind him

You are a support worker providing respite to Alia who is in her mid-40s. Alia has become a carer for her father since the death of her mother some years ago and is afraid of losing her father as well. She has no other relatives. Alia’s father has a disability affecting his mobility and that confines him to an electric chair. Alia worries about him constantly. She does everything for him despite him protesting he is able to do some things for himself.

In discussion with Alia and her father, an arrangement has been made for you as support worker to stay with him in his home for 3 hours at a time, twice a week to enable Alia to go to her own appointments and have some ‘me’ time.

Alia constantly worries about her father and does not like leaving him with you (or anyone else) during this time. She often comes back to the house early with poor excuses or leaves late so her father is not alone with you.

Alia constantly gives you instructions for her father and tells you what her father likes and dislikes.

Question

How will you work with the carer (Alia) and person needing care so that the carer can enjoy the respite time she is provided?

Post your response online or discuss your thoughts with your trainer or colleague to the question.

We aim today to be able to keep a person in their own home as long as possible.

Carers, friends and the family of the person needing care often provide significant support in terms of emotional, physical and social assistance. They may also provide advice on decisions that need to be made.

There are a range of support services for the carer, family members and the person requiring care to enable them to remain in their own home as long as possible. These types of support mean the relationship between carer, family members and person needing care can be more easily maintained. The person in care is able to live an active life and enjoy participation in activities within their own community and environment.

Support mechanisms

Support mechanisms to do this include:

Remember as a support worker you should not be taking over and telling the carer, a person needing care or family members what support they need. Your role is to:

  • complement them
  • work together to identify the support needs
  • agree on support needs that will benefit the person requiring care.

In preparation for asking the question of the carers, family members and person requiring care what it is that they need in terms of support you might consider:

  •  How the carer, family member or friends currently support the person needing care
  • What role or part do they play in the person’s life – mentor, friend, physical comfort, emotional support; listener; day-to-day personal things like bathing, cleaning, preparing meals
  • The skills, knowledge and experiences they can offer to enhance and maximise support
  • The skills, knowledge and experiences you as a support worker can offer to maximise support
  • Ways in which you might investigate so that any support you can find can be maximised to the benefit of the person requiring the care
  • The way in which you will work with the carer, family members and person needing the care to ensure care and support is maximised, ensure the comfort of the person needing care and support all persons involved in the day-to-day life of the person being cared for

They can tell then tell you their requirements and you can look to maximise through service providers and government organisations and funding to get the support they have requested.

Activity – case study and question
Case study
A senior woman receving help for a shower from a younger woman

Hilda is in the early stages of dementia, and she has been independent with her own personal care for the time that she has lived in the retirement village. She showers herself each morning, and the plan reflects this. She has two support workers – Noeline who comes in for the morning care and Yusef who attends at night to check Hilda is eating her evening meal and needs no further support. Noeline helps her get ready to shower, setting out towels, soap, and clean clothing of her choice, but Hilda does the rest. Recently, the support worker noticed Hilda has a persistent odour.

Hilda has also complained of a rash under her breasts to both support workers. Yusef has concerns that Hilda can no longer attend to her own personal hygiene needs well.

Yusef lets his coordinator know about these concerns and writes down in Hilda’s file what he has noticed. He also adds the information in the communication book left at Hilda’s home for the family to read. Hilda’s family life away from her and one of them will usually visits at least once every three weeks.

The coordinator, Yusef and Noeline come up with a plan. Yusef suggests Noeline have a talk with Hilda about her showers. The coordinator also suggests Yusef and Noeline make time to speak with the family about the level of dementia and further care Hilda may need.

Noeline asks her if she feels that she needs any further help. Hilda says no. She looks at Noeline with a worried look on her face.

Question

What actions might you come up with to maximise the support Hilda needs to meet her showering needs as her dementia gets worse?

Post your thoughts online or discuss them with your trainer or colleagues.

Module Linking
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Elder woman getting help to get up from an assistant
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