Changing role of family carers of people with learning disabilities

Module overview

People who care for a family member who has learning disabilities face many of the same challenges as those in other family carer roles, but with distinct differences. Many people with learning disabilities depend on family support all their lives, regardless of where they live, or until the carer dies. This module explores the experiences, challenges and rewards of being a family carer, focusing in particular on what happens when the person with learning disabilities moves out of the family home. Recognising carers’ experience, expertise, involvement and what is important to them can have a positive effect on outcomes.

Keywords

carers, family carers, intellectual disabilities, intellectual disability, learning disabilities, learning disability

Aims

This module explores the experiences, challenges and rewards of being a family carer for a person with learning disabilities, focusing especially on understanding their situation when the family member moves out of the family home to other community living arrangements such as tenancies, shared housing, core and cluster housing, intentional (designed) communities and residential care homes. For consistency, the term ‘community home’ is used for all of these types of accommodation. The module provides a summary of some key articles, illustrated by points for learning and reflection.

Intended learning outcomes

The aim of the module is to help students and practitioners develop empathic and supportive insight into the needs of family carers of people with learning disabilities.

After reading this module and completing the time out activities, you should be able to:

• Define what is meant by a family carer.
• Analyse the challenges facing family carers of people with learning disabilities.
• Outline what family carers consider to be the positive aspects of caring for people with learning disabilities.
• Discuss why family carers may plan for a member with learning disabilities to move out of the family home.
• Reflect on what is important to family carers, when the person moves out of the family home.

Introduction

Family carers have been a major focus of policy and research attention over recent years. Census data released by the Office for National Statistics (2011) shows that there are around six million people providing unpaid care for an ill, frail or disabled family member or friend. This statistic includes family carers of people with learning disabilities, who play a vital role in the lives of their loved ones.

James (2013) points out that the day-to-day support of family members is of fundamental importance to the continued wellbeing of the person being cared for. Who is actually classed as a ‘family carer’ of a person with learning disabilities can include a wide range of significant people in the person’s circle, all of whom are relied on for support.

Think about the families of people you know with learning disabilities and consider what is meant by a ‘family carer’. You may want to discuss this with your colleagues and consider whether the term means that the people concerned are related. Are they still ‘family carers’ when the person has moved out of the family home?

The National Family Carer Network (NFCN) (2012) identifies a family carer as someone who has personal experience of caring for a family member with learning disabilities. This may mean:

• The carer has personal contact, perhaps face to face and/or through using electronic media such as Skype, Facebook, telephones or text.
• The carer is someone who is not paid to have a personal, continuous relationship with the person.
• Not all family carers will necessarily be blood relatives of the individual with learning disabilities.
• Some people may choose to support a person as they would a family member, so would define themselves as a ‘family carer’.
• The extent and nature of family carer involvement varies and may change during the life course.
• Some family members may not consider themselves ‘carers’ even when they are supporting their loved ones.
• Even though the individual may no longer live in the family home, the family carer is still a significant part of their life.

Being a family carer has many challenges and these vary during the family carer‘s journey (Grant 2010, James 2013). Many factors have been studied that help explain the challenges faced by family carers, and the theoretical model of stress, coping and adaptation has been used extensively in research (Minnes et al 2007).

This theoretical model focuses on how distress is initially accommodated by the family, whose members need to make lifestyle changes to adapt to their situation.

The stress of being a carer and strategies for coping with it have been linked to many factors, such as individual characteristics and personal circumstances, and the gender, personality, age, experience and health of the family carer (Figure 1) (Nolan et al 1996).

Figure 1. Factors linked to family carer stress

How the carer’s situation is appraised (Cohen and Lazarus 1979) and the meaning that carers attach to their situation are also connected to stress and coping (Antonovsky and Sourani 1988). This helps to explain why caring can be perceived as a positive or negative experience, and why family carers vary in the extent to which they feel they can cope.

Adapting to their situation involves external resources, such as economic support from services, as well as social support from friends, family and other networks (McCubbin and Patterson 1983).

Resources and support have been referred to as ‘mediators’ of stress (Cohen and Lazarus 1979). Examples include having access to a range of effective services (Twigg and Atkin 1994), including services that are person-centred and meet the individualised needs of those who use them (Department of Health (DH) 2007, 2008, Mencap 2013).

Features of family caring

Person-centred care: an integral feature of good quality services is recognising that person-centred approaches mean listening to relatives, drawing on their experience and learning from their expertise (Woods et al 2008).

Promoting best interest: an important feature of family caring is advocating for the person with learning disabilities and promoting their best interest, given that the person may lack the competence needed to take full control of their own decisions (Sales 2003) and may need support with decisions and future plans (Towers 2013a). It is crucial that family carers have confidence in services and all forms of support.

The type of support families need will vary throughout the person’s life and may be short-term, in the form of respite care (Mencap 2003, 2006), or longer term, such as when their family member moves from the family home, to live in a community home.

Unconditional care: while family carers of people with learning disabilities are recognised as being committed to providing unconditional long-term care (Hogg and Lambe 1999), it is important to be aware that the caring role can go on for years, with vulnerable adult children or relatives often dependent on family support all their lives.

Continual support: a significant feature for family carers of people with learning disabilities is that care-giving begins with the birth of the child and may continue until the carers die (Llewellyn et al 2004). Moreover, the family caring role continues whether or not the person lives in the family home.

Activity 2

This activity is intended to help you consider some of the further challenges for family carers of people with learning disabilities. Jake is aged 22 and lives at home. He has profound and multiple intellectual disabilities, hearing loss and epilepsy. He communicates using signs, gestures and objects of reference. If people do not understand what he is communicating, Jack gets frustrated and bites his hand.

He needs a lot of support with personal care, such as feeding, dressing and bathing, and does not always sleep well. Jack's main carer is his mother, who can understand his communication and anticipates his needs. His two younger sisters also live at home and, while his father left the family home five years ago, he still has contact.

Jake spends two days a week with a personal assistant, who involves him in a range of meaningful activities inside and outside the family home, which Jake enjoys. Given the nature of Jake’s needs, and the known family circumstances, what do you need to understand about what Jake’s mother is trying to do?

Challenges experienced by family carers

Physical and emotional challenges

Family carers of people with learning disabilities experience many competing physical and emotional challenges, as well as juggling their other family and relationship needs. They may be caring for people with additional needs, such as challenging behaviour (Minnes et al 2007), autistic spectrum disorder (DH 2010a) or mental health problems (Cooper et al 2007, Royal College of Nursing 2010).

Some families are caring for individuals like Jake (Time out activity 2) who have profound and multiple intellectual disabilities and additional care needs (Mansell 2010). These may include sight and hearing problems and physical disability, necessitating help with personal care such as feeding, dressing, washing, transferring and postural care.

Family carers may also be caring for people with epilepsy, dysphasia and other complex health needs, requiring help with transport, specialist equipment and laundry (Lacey and Ouvry 1998). Families of people like Jake, who also has sleep problems, are likely to require respite care services to help them cope (Mencap 2003, 2013).

Financial challenges

In addition to the physical and emotional challenges of caring (Grant and Wenger 1993), family carers may also have financial difficulties (Carney et al 1994). The demands that caring places on time, which are related to the individual‘s level of disability and function, can put further strain on families (Slater et al 1986). These demands often result in carers having to arrange and access other services and professionals (Mansell 2010), which can take up more time.

Floyd and Gallagher (1997) found that while the physical demands of caring are stressful, the presence of significant behaviour problems in the individual linked to mental health issues presents further challenges.

Effects on siblings

Some families experience relationship breakdown (Beresford 1994), and a child with a disability may affect other family members, such as grandparents (Hastings 1997). Siblings have been reported to have higher expectations placed on them to compensate for the limitations of the disabled child (Yura 1987).

Mencap (2013) describes how siblings experience the impact of their family’s caring responsibilities and how this can mean less time and attention for them because of the amount of time taken up by the disabled child. Some siblings can find this situation difficult to understand and feel resentful.

Many factors such as age, position in the family and the way family members interact with one another, influence the situation (Smith and Lloyd 2003). As Smith and Lloyd suggest, siblings are more likely to adapt in a positive way when they are part of a family environment where communication is encouraged and they experience warm and cohesive relationships, providing them with skills to deal with both positive and negative feelings.

Learning Points

1. Family carers of people with learning disabilities have a vital role in the lives of their loved ones. Census data released by the ONS (2011) shows that there are around six million people providing unpaid care for a family member or friend.
2. Day-to-day support of family members is fundamental to the continued wellbeing of the person being cared for. The continued presence and support of family carers is an integral factor in the quality of life of people in need of care, including people with learning disabilities.
3. The extent to which the family carers adapt to the situation involves the external resources, such as economic support from services, as well as social support from friends, family and other networks. Resources and support have been referred to as ‘mediators’ of stress.
4. The stress of being a carer and coping strategies have been linked to many factors, including individual characteristics and personal circumstances, and the gender, personality, age, experience and health of the family carer.
5. Important features of family caring include advocating for the person with learning disabilities, promoting the best interests of the person with learning disabilities and supporting them with decisions and future plans.
6. The type of support that families will need varies throughout the person’s life. Respite care is considered short-term care support, enabling family carers to have a break from the caring role. Longer-term support is when the person with learning disabilities moves from the family home to live in a community home.

Life journeys

The transitions that family carers go through during their life journey and the associated challenges have been documented (Grant et al 1998, James 2011, 2013). Contemplating the reality of bringing up a child with a learning disability can begin after the child is born (Scorgie and Sobsey 2000) or before, as a result of genetic testing (Grant et al 2010).

While families usually adapt positively over time (Beresford 1994), when a family first hears that a child has learning disabilities, the emotional impact has been described as being similar to grief and loss; some report anger and feelings of meaninglessness and powerlessness, particularly in the early period following diagnosis (Darling and Baxter 1996). Hornby (1994) discusses the importance of professionals communicating the results of an initial diagnosis of disability with empathy, sensitivity and openness.

There is also evidence that families experience further challenges at various transition stages in the life cycle of the child and family (Marshak et al 1999). Examples are adolescence, leaving school and when an older child leaves home. It is during these stages that families are likely to need the support of other services (James 2011).

However, family members respond in different ways (Grant and Whittell 2000), which may change over time (Seltzer and Krauss 1989) and this can become increasingly difficult as the child with disabilities ages, because of diminishing support networks. In some cases, when circumstances change the caring role can become a reciprocal one where the person who is being cared for provides support in their own right and a mutually supportive partnership develops (Williams and Robinson 2001).

Mutual care is, however, dependent on the degree of capability that the person with learning disabilities has. Over time, a carer‘s health may decline, which will affect future care-giving (Chen et al 2001) and in some cases mental health issues may arise, including depression, which is more common in carers than in the general population (McGrother et al 1996). Although these studies highlight the challenges, many families also report positive experiences, which are illustrated in the next section.

Activity 3

Akio is aged 19, has learning disabilities and lives with his parents and sister. He has autism, which affects his communication and social skills. When he was younger, he had difficulties with his behaviour, but with good quality person-centred thinking and support, including from the autism team, he copes well and is generally happy.

He has a job in a local supermarket, and is a conscientious and reliable worker. Akio does not initiate or contribute a lot to conversations, and can become easily frustrated if something changes in his routine. However, he is helpful and hard working.

He has a good relationship with his family, who encourage him to be more independent and to become involved in support networks. Imagine you are interviewing Akio’s family. What questions would you ask about the rewards of living with Akio? What do you think count as successes and achievements for Akio and his family?

‘Family resilience’ and the benefits of care-giving

The ways in which families develop coping strategies over time have been reported (Grant et al 1998, Hastings and Taunt 2001) and the concept of ‘family resilience’ helps towards understanding how families adapt to their situation and meet the challenges of caring (Walsh 2003).

It has been noted that many families who have a member with a disability develop the capacity to make sense of their situation, find meaning and become more resourceful, enabling them to adjust and develop coping mechanisms (Antonovsky and Sourani 1988).

Evidence also supports the positive contribution the disabled person makes to the family (Summers et al1989). Beresford (1994) points out the specific benefits of care-giving and adapting to the role, which are linked to a sense of accomplishment, including carer expertise, self-satisfaction and mastery.

Hastings and Taunt (2001) also focus on positive attributes, including pleasure and satisfaction in providing care and, in some cases, a strengthening of family relations. Earlier studies focused on how specific situations can help families develop coping mechanisms; for example, learning to deal constructively with embarrassing situations arising from the child’s behaviour (Wikler 1986). Others found increased family coherence, which helped family members develop positive attributes, such as stronger humanitarian values and increased tolerance (Seltzer and Krauss 1989).

The way in which family carers respond to the challenges of caring demonstrates that coping mechanisms and resilience develop over time. Some carers report that this helps them to be more assertive in seeking support and information from professionals (Winefield 2000).

Learning Points

1. Contemplating the reality of bringing up a child with a learning disability can begin before or after the infant is born. Families usually adapt positively over time, however, when they first hear their child has learning disabilities the emotional response has been similar to grief and loss.
2. In some cases, mutual care is noticed as circumstances change where the caring role can become a reciprocal one and the person who is being cared for, provides support in their own right and a mutually supportive partnership develops.
3. It has been noted that many families who have a member with a disability develop the capacity to make sense of their situation, find meaning and become more resourceful, enabling them to adjust and develop appropriate coping mechanisms.

Letting go

While many carers find short breaks in community homes a vital resource to help them cope (Mencap 2006, 2013), at some stage a decision and a plan may need to be made for the person to move out of the family home permanently. This is an important part of the family carer‘s journey and is the critical stage described in commentaries as ‘letting go’ (Grant et al 2010).

Reasons for this decision are varied and while some are based on the physical demands of caring and decreased support (Llewellyn et al 2004), some suggest that the move is determined by trends based on encouraging and supporting people with learning disabilities to live in circumstances consistent with their preferences and choices (Braddock et al 2001, DH 2001).

Letting go therefore enables them to live a more independent life, with a home of their own (Grant 2010). Families also report having concerns about what will happen after the death of parents (Grant 2010) and that this necessitates ‘thinking ahead’ (Towers 2013a). Towers (2013b) suggests a range of proactive strategies for planning how to help the person move on from the family home.

Regardless of the reason for moving on, the experience is often a difficult and painful one for families (Schwartz 2005). Concerns shared by many family carers are that services may not be able to provide the standard of care that they have given (Grant et al 2010).

It is also important that family members do not move too far away from their relatives (Beadle-Brown et al 2006) so that they can stay in contact.

Activity 4

Spend a few minutes thinking about the effects on the lives of a person with a learning disability and family carers, when a member of the same family moves into the community home. Reflect in particular on the practical and emotional issues for all concerned.

Joe is aged 38 and has moderate learning disabilities. He lives with his father, Stan, now in his sixties and with chronic obstructive pulmonary disease, in a rural area with a limited bus service. Joe’s mother died two years ago. His brother, who lives abroad, visits about three times a year.

A carer comes in daily to help Stan and Joe, who needs support with personal care and making decisions. Joe attends a college vocational preparation course three days a week, which he enjoys, but rarely goes out socially, which makes him unhappy.

Stan likes having Joe around but realises that he wants to move to a place of his own and spend more time with people his own age. He has had discussions with Joe, his care manager and community nurse about Joe moving to a ‘core and cluster’ flat in the local town, but is upset about the proposed move. What are the main issues for Stan, the family carer?

The letting go stage will be a challenging time for Stan and Joe (time out activity 5) and there will be mixed emotions as they plan for the future.

Stan is less able to cope with the demands of caring as his health has declined and he is aware that support from other family members has diminished. He wants to make alternative care arrangements before he dies and ensure that Joe has good quality, person-centred support, which is important to family carers in situations like this (Grant 2010, Towers 2013a).

Stan may feel deeply upset, thinking he is letting his late wife down, and may also feel guilty about the decision; he may have a sense of loss and feel depressed. His emotions need to be understood as they will affect how he interacts with services, professionals and advocates involved in planning and managing the transition. He needs to be involved in the person-centred planning (Sanderson 2010) and continue to be a valued member of Joe’s support network.

Guidelines for recognising, valuing and supporting family carers like Stan are provided by the DH (2010b), while Towers (2013b) also provides practical guidance to help families in similar situations to that of Stan and Joe. This guidance includes the recommendation that local authorities ensure planning for the future is part of policy and guidance.

Towers (2013b) also proposes ‘thinking ahead’ information days and workshops. These help families to look at options and plans for the future, and how local authorities, care managers, community learning disability teams, family support groups, organisations, such as Mencap, can help.

Conclusions

• It is important that practitioners and those involved in policy making have insight and develop an empathic approach towards family carers of people with learning disabilities at all stages of the life course, whether the person lives in the family home or not.
• This approach involves being mindful of the challenges family carers face, how families develop coping strategies, the positive aspects of caring and the support they need to cope when a family member has a learning disability.
• It also means understanding that their situation will change for many reasons, including a diminishing capacity to cope with the demands of caring or when a main carer dies. Families need to anticipate and plan ahead for when this happens.
• It is vital, therefore, that the relationship is understood in the longer term, such as when their loved one is planning to move or has moved out of the family home and why family carers need to have peace of mind when this happens.
• When the person with learning disabilities does move away from home, family carers are still an important part of their support network and want the best for their family member, which includes a person-centred and safe environment.
• Recognising them as collaborative partners, who have a wealth of experience to share, is central to the practitioner’s role in promoting positive outcomes.

• Acronyms

  DH: Department of Health
  ONS: Office for National Statistics
  NFCN: National Family Carer Network

• Glossary

  Autistic spectrum disorders: a group of disorders characterised by impairment of development in multiple areas, including the acquisition of reciprocal social interaction, verbal and non-verbal communication skills, and imaginative activity, and by stereotyped interests and behaviours.
  Dysphasia: an abnormal condition in which language function is disordered or absent because of an injury to certain areas of the cerebral cortex, for example following left-sided stroke.
  Epilepsy: a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness or seizures, associated with abnormal electrical activity in the brain.
  Intellectual disabilities: significant limitations in the functioning of the intellect that alter behaviour with the result that many social and practical skills are affected.
  Learning disability: a significantly reduced ability to understand new or complex information and learn new skills, with a reduced ability to cope independently. Starts before adulthood and has a lasting effect on development.
  Theoretical model of stress: a method that recognises the stages family members experience as they adapt to cope with new circumstances.

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• Author

  Marie Elizabeth Gressmann, Senior lecturer in learning disability nursing, School of Health and Social Care, Teesside University, Middlesbrough.

  
  

  Short description

  Carers have a vital role in caring for people with learning disabilities. Read this module and learn more about the role, experiences, challenges and rewards of being a family carer.

  
  

  Detailed description

  People who care for a family member who has learning disabilities face many of the same challenges as those in other family carer roles, but with distinct differences. Many people with learning disabilities depend on family support all their lives, regardless of where they live, or until the carer dies. This module explores the experiences, challenges and rewards of being a family carer, focusing in particular on what happens when the person with learning disabilities moves out of the family home. Recognising carers’ experience, expertise, involvement and what is important to them can have a positive impact on outcomes.