9: Living with a long-term neurological condition

CHAPTER 9
Living with a long-term neurological condition


9.1 Introduction


Throughout our lives we encounter a range of situations which require us to change or adapt as we move from one life phase to another. This process of adjustment can be easier for some than others and is believed to be dependent on a number of factors. This chapter will access theories of transitions in an attempt to understand the processes of adjustment and why some people living with neurological illness adapt more successfully than others. This will be placed within the context of occupational therapy practice and will consider the role of the occupational therapist in facilitating positive change.


9.2 Transitions theory


Transition refers to ‘changes in our status that are discrete and bounded in duration although their consequences may be long-term’ (George, 1993). Transitions are both a result of and result in changes in our lives, health, relationships and environments (Meleis et al., 2000). Successful transition is dependent on expectations, level of knowledge and skills, availability of new knowledge, available resources, capacity to plan for change and emotional and physical well-being (Schumacher and Meleis, 1994).


Transition can be framed within four categories (Adams et al., 1976) as follows:



  • Predictable – voluntary, for example most relationships
  • Predictable – involuntary, for example national service
  • Unpredictable – voluntary, for example blind date
  • Unpredictable – involuntary, for example unexpected events such as diagnosis with a long-term neurological condition.

Central to transitions theory is the concept of reconstruction of a valued self-identity (Kralik et al., 2006). Diagnosis with a long-term neurological condition can have a substantial cost to personal identity as people withdraw from former roles or perceive themselves to be failing within their existing roles, leading to a loss of self-worth and self-esteem (Preston et al., 2014). The importance of relationships and connections are also seen to be an integral part of successful transition (Kralik et al., 2006).


The types of transitions which may increase vulnerability for people living with a long-term neurological condition can be considered within three main categories as follows:



  1. Illness experiences (e.g. diagnosis, surgical procedures, rehabilitation and recovery)
  2. Developmental and lifespan transitions (e.g. pregnancy, childbirth, parenthood, adolescence, menopause, ageing and death)
  3. Social and cultural transitions (e.g. migration, retirement and family caregiving) (Meleis et al., 2000).

9.3 Illness experiences


9.3.1 Diagnosis with a long-term neurological condition


The process of diagnosis with a long-term neurological condition can be challenging and lengthy given the lack of definitive diagnostic tests available. Receiving a diagnosis is usually a memorable and monumentous event accompanied by feelings of vulnerability and at times relief as people try to understand the meanings and consequences that the diagnosis holds for their present and their future (Kralik et al., 2001). Significant differences will be apparent within the diagnostic journey and the subsequent expectations for people diagnosed with a long-term neurological condition. Some people may receive the diagnosis with a resultant shock, anger and depression. For many this may immediately create a negative perception of life dependent on assistance from others or even premature death (Preston, 2009). For others who may have had previous experience of the condition, particularly in a hereditary condition like Huntington’s disease (HD), their personal reflections may be drawn to the challenges of caring and the perceived burden of care on others.


Issues of fear, anxiety and uncertainty may be apparent not only at the diagnostic phase but also for some will continue throughout the course of their disease. Richard, diagnosed with multiple sclerosis (MS) nearly 40 years ago still reflects his anxieties as he describes how the disease has insidiously gnawed away at his life:



I did a lot of reading on what it [MS] was, and eh…so I began to understand what it was wrong with me but then I started to get attacks, …my hands start…well I’ve always had my hands tingling, you know, that was the first thing, but gradually…other aspects crept into my condition, it seems you get one condition and that diminishes and then before you know it another part of the condition occurs and just gradually over the years I mean…had, I lost the eyesight in my left eye, …I lost balance, then I was completely numb down one side of the body…um, so it just gradually built up with time and I had to decide how to get over these things. I mean at one stage when I had to get carried up the stairs, my kids and wife carried me up the stairs, well not carried me, pushed me up the stairs because I couldn’t get up the stairs, well not on my own because I was completely paralysed down one side. That lasted about a month, and then it disappeared. As I say it creeps up on you and before you know it, bang it’s there and you’ve got to deal with it some way.


(Preston, 2009)


Lack of information at the time of diagnosis also impacted on the understanding and the subsequent perceptions of control for people living a life with MS. Jennifer recalls how reassured she felt when she was advised that she could have 20 years without any further incidents. Despite her initially positive expectations of a life with MS, her hopes were quickly dashed however when she experienced her first relapse after 2 years:



So my GP told me I could go another 20 years without another attack and I only lasted 2 years (laughs). And it just seems to get worse and worse with every attack.


(Preston, 2009)


9.4 Rehabilitation and recovery


Rehabilitation within the context of long-term neurological conditions involves (Gutenbrunner et al., 2011):



  1. Assessing functioning in relation to health condition, personal and environmental factors
  2. Delivering interventions to:

    • Stabilise, improve or restore impaired body functions and structures
    • Prevent impairments and medical complications
    • Manage risk
    • Compensate for the absence or loss of body functions and structures.

  3. Delivering programmes of intervention to optimise activity and participation through:

    • A person-centred problem-solving process
    • Working in partnership with the person with the long-term neurological condition
    • Working within a biopsychosocial framework
    • Applying and integrating biomedical and technological interventions
    • Education and counselling
    • Occupational, vocational and social support
    • Physical and environmental adaptations.

Occupational therapists have a key role to play in supporting people newly diagnosed with a long-term neurological condition as Paterson (2001) acknowledged the paradox of managing a condition which at times may be absent of symptoms but which requires acknowledgement of the limitations it creates on everyday life.


Early occupational therapy intervention should:



  • Use open and genuine communication to encourage people newly diagnosed with a long-term neurological condition to tell their story and facilitate their coming to terms with the diagnosis
  • Support people recently diagnosed with a long-term neurological condition to validate their experience by helping them to understand their symptoms and how they impact on their everyday lives
  • Support the person living with a long-term neurological condition to find strategies which help them to cope with unpredictability and gain control of their lives
  • Support the person living with a long-term neurological condition to mediate the effects of the disease through focussing on the emotional, spiritual and social aspects of life rather than primarily on the disease (Paterson, 2001).

9.5 Lifespan transitions


9.5.1 Parenthood


The decision to start a family should never be one that is taken lightly; however, additional factors may be required to be taken into consideration when you have been diagnosed with a long-term neurological condition.


Where there is a family history of a long-term neurological condition, for example HD or MND, there may be concerns about the risk that children will develop the condition in later life. For some this risk may feel too high, and they would rather avoid having children. Some couples may wish to consider gamete donation or adoption. Couples at risk to HD may find it more difficult to adopt although they may be able to undertake fostering. In vitro fertilisation (IVF) and artificial insemination by donation (AID) may also be considered (Huntington’s Disease Association, 2012).


People living with a long-term neurological condition often worry about the practical aspects of parenting and how they will manage to look after their children. For Diana however there were different considerations as she reflected on a very poignant decision about her role of becoming a mother:



Children. That was part of the marriage break up. I was, I was going for IVF, I was diagnosed with the MS…and that was okay. I went you know, went for the first month’s course and…some woman that was in as well, she said ‘do you think it is right for you to be doing IVF if you’ve got MS?’ I said ‘what do you mean?’ So she said ‘well, she says maybe you are going to have a child that will end up looking after you’ so I thought, no I said because I wouldn’t do that. So that was end of conversation. In the drive back home I thought about it and pulled over and I thought she’s bloody right, I don’t want to bring a life into this world that would maybe have to, well like at the moment I couldn’t carry the coffees through for my friends, they have to go and bring the coffees through themselves. So…you see children on the Red Nose day, there was that little girl looking after both her parents, mother and father, she was only 12, 13 and I thought…where’s her childhood, she’s not getting any, she’s doing the dinner and she’s doing the washing, she’s doing the ironing and that broke my heart because I thought she’s a baby. She needs to be having…fun with young friends, but…not doing things like that, but I don’t, yeah…it’s hard, don’t get me wrong, it is hard but…I think it would be harder for me if I had them. How would I cope with this little life having to do this, that and the other for me and no…no….


(Preston, 2009)


The occupational therapist can support people living with a long-term neurological condition by:



  • Providing information and support to help the person living with a long-term neurological condition to make informed decisions
  • Supporting difficult decisions through the provision of emotional and psychological support
  • Providing practical solutions to aspects of looking after a child, for example techniques for safe handling of a baby or small child; manipulating small fastenings when dressing a small child; or practical aspects to consider when choosing a pram or pushchair
  • Providing strategies for fatigue management
  • Environmental adaptation
  • Developing strategies to compensate for loss, for example loss of mobility, loss of strength and cognitive changes

9.6 Social and cultural transitions


9.6.1 Work


Many people living with a long-term neurological condition are of working age at the time of symptom onset (Playford et al., 2011). Work is integral to daily life, providing financial support, emotional and psychological well-being, self-esteem, security and independence (Baldwin and Brusco, 2011). Maintaining work roles is therefore often a high priority for people living with a long-term neurological condition (Playford et al., 2011; Radford et al., 2013; Sinclair et al., 2014). Occupational therapists support people living with a long-term neurological condition to enter or return to work, remain in existing jobs, prepare and retrain for alternative job options and access appropriate alternative occupational and educational opportunities.


Vocational rehabilitation is ‘a multi-professional evidence-based approach that is provided in different settings, services, and activities to working age individuals with health-related impairments, limitations, or restrictions with work functioning, and whose primary aim is to optimize work participation’ (Escorpizo et al., 2011). Disability and return to work following diagnosis with a long-term neurological condition has been recognised as a process influenced by a variety of social, psychological and economic factors (Franche and Krause, 2002). Characteristics of the work environment, the health status of the individual and the insurance system all have a significant influence on return-to-work outcomes independent of the underlying medical condition (Franche and Krause, 2002).


Vocational rehabilitation is a process of engaging or re-engaging a person with work (Escorpizo et al., 2011). Return to work has been conceptualised as a continuum of events from being ‘off work’, ‘re-entry’, ‘retention’ and ‘advancement’ (Young et al., 2005). Vocational rehabilitation is designed to maximise work participation of people living with a long-term neurological condition and to promote their full participation in society (Parker et al., 2005). Vocational rehabilitation involves the processes by which services improve a person’s capacity for work, help them return to work or assume work duties at a permanent and sustainable level (Escorpizo et al., 2011).


Remaining in work


People living with a long-term neurological condition are less likely to remain in work when compared to those living with chronic diseases such as arthritis, diabetes or depression (Varekamp et al., 2008). Although more than 90% of people living with MS are employed prior to developing the disease, it is estimated that between 70 and 80% will become unemployed within 5 years of diagnosis (Strober et al., 2012).


Demographic aspects such as age, gender and level of education and disease-specific factors such as disease duration, disease course, neurological disability and symptomatic impairment have been found to be associated with employment status (Krause et al., 2013). Risk factors for unemployment among people living with long-term neurological conditions include female gender, low education level, high degree of neurological impairment and a progressive disease course (Strober et al., 2012). Males and older persons are more likely to leave work however because of a long-term neurological condition (Simmons et al., 2010).


Key factors which impact on the ability to remain in work include transport to and from work; moving around at work; equipment use; and impact of symptoms including fatigue, cognition balance and bladder dysfunction (Simmons et al., 2010). Once out of work the challenges of everyday job-hunting may be amplified for people living with long-term neurological conditions as they may need to overcome additional factors such as reduced confidence following a dismissal process, loss of benefits, gaps in their curriculum vitae (CV) and an uncertainty about if or when to disclose their diagnosis.


Disclosing a long-term neurological condition


People living with a long-term neurological condition are not legally required to disclose a health condition unless they work within the armed forces, onboard an aircraft or if their condition puts themselves or others at risk (HMSO, 2010). Employers are not permitted to ask about health status or disability. The onus is on the person living with a long-term neurological condition to be honest as provision of false information could affect their employment at a later stage.


Early disclosure appears to support earlier adjustments being put in place for the person living with the long-term neurological condition. There can however be a strong fear that disclosure will result in discrimination resulting in loss of promotion or being sacked (Sweetland et al., 2007). Personal identity and trust may also be impacted by disclosure (Dyck and Jongbloed, 2000). Although employers will be concerned about the ability of the person living with a long-term neurological condition to meet the job requirements the evidence suggests that most employers want to do the right thing by valued employees and an appropriately timed and supported disclosure could well lead to a better understanding and more effective accommodation within the workplace (Simmons et al., 2010).


Occupational therapists can support disclosure by (adapted from Multiple Sclerosis [MS] Society, 2010):



  • Providing advice and information on the individuals rights under the Equality Act (HMSO, 2010)
  • Encouraging the person living with a long-term neurological condition to consider the pros and cons of disclosure specific to their industry, relationships at work, diagnosis and needs in the work place.
  • Encouraging the person living with a long-term neurological condition to make a list of who they will disclose to, when, where and what information about their diagnosis and symptoms they are happy to share.
  • Encouraging the person living with a long-term neurological condition to write a script of that they will say.
  • Practice saying this out loud to others first as this can sometimes be an emotional experience.
  • Positively frame the situation for example, ‘Yes relapsing and remitting MS is unpredictable and I may not know when I may have a relapse, this could be in a few months’ time but could also be in several years’, ‘I have a good medical care team who can help me manage my condition’.
  • Encouraging the person living with a long-term neurological condition to make sure that any agreed adjustments are formally documented through Human Resource departments as future changes in management could affect these.

Equality Act


The Equality Act (HMSO, 2010) provides the legal statute to protect people living with disabilities from being disadvantaged in work. It stipulates that employers have a duty to make reasonable adjustments to the work place or working arrangements. However, what is considered ‘reasonable’ for the employer to implement is influenced by a number of factors such as how effective the change will be and its practicality, the cost of implementation and the size of the organization. The Equality Act (HMSO, 2010) defines ‘disabled’ as a ‘substantial’ physical or mental impairment lasting longer than 12 months and that has a negative effect of the ability to carry out everyday activities of daily living.


Return to work


In most cases people living with long-term neurological conditions choose to leave their employment voluntarily and often before their illness has rendered them incapable of working (Rumrill et al., 2008). However, there is increasing evidence that people living with long-term neurological conditions may leave work prematurely. As many as 80% of people living with a long-term neurological condition who have voluntarily given up work believe they still have the ability to work and indicate that they would like to re-enter the workforce (Rumrill, 2009). People who receive disability benefits face particular difficulties in restarting their careers (Rumrill, 2009). It is therefore essential that people living with long-term neurological conditions are supported to make the correct decisions, at the right time, about their employment choices.


Early intervention is critical in supporting people living with a long-term neurological condition to reduce or remove job-related barriers before they undermine job satisfaction and, eventually threaten job retention (Roessler, 1996; Roessler and Rumrill, 1995). People living with a long-term neurological condition need to be able to re-access services as and when required. Consequently services should be open access and empower the person to take control of and manage their own situation (Roessler, 1996; Roessler et al., 2001, 2004).


Occupational therapists can support vocational rehabilitation approaches which include the following:



  • Supporting people living with long-term neurological conditions with emotional self-management and support with disclosure and issues around discrimination.
  • Empowering people living with long-term neurological conditions through education and support.
  • Delivering interventions that focus on self-confidence and self-efficacy with regard to work-related problems.
  • Supporting people living with long-term neurological conditions with work planning, effective decision-making, defining and implementing accommodations.
  • Visiting the worksite to make more accurate assessment of need.
  • Providing education about relevant legislation and how it applies to the person living with a long-term neurological condition, the nature of reasonable accommodation and advice on how to document any discrimination.
  • Providing interventions that improve performance, compensate for changing performance or modify performance by reducing the demands of the task (Sweetland et al., 2007; Yorkston et al., 2003).
  • Ensuring that strategies do not focus on reducing the impairment but on performance of an activity (Sweetland et al., 2007; Yorkston et al., 2003).
  • Minimising the impact of symptoms on work (Johnson et al., 2004).

Supporting employers


Employers play a key role in providing holistic and integrated care for people living with long-term neurological conditions to remain in work (Zheltoukhova, 2011).


Occupational Therapists can support employers by (Zheltoukhova, 2011):



  • Providing accurate and relevant information about the neurological condition
  • Providing a key resource to discuss aspects of the neurological condition and the potential impact of symptoms on the individual’s performance at work
  • Supporting employers to find practical realistic solutions within the workplace
  • Enabling employers to provide a flexible working environment, including work schedules
  • Providing information regarding schemes such as Access to Work as early as possible to support the employee living with a long-term neurological condition
  • Working with GPs to support phased return to work according to the fit note
  • Preserving job quality, avoiding excessive or damaging job demands and take heed of good ergonomic practice
  • Providing tailored vocational rehabilitation to support return to work, productivity, morale and sustainability of performance.

9.6.2 Driving


Driving is a key part of life for many people living with a long-term neurological condition. Driving is an occupation in itself which provides meaning and purpose as people engage in driving for a number of reasons. There is general acceptance that driving promotes community mobility, supports maintenance of social networks and forms part of daily routines, for example taking children to school (Canadian Association of Occupational Therapists [CAOT], 2009). For others, driving promotes a sense of freedom and enjoyment. Consequently stopping driving is associated with lost social activities and depression even when other forms of transport are available (Hawley, 2001).


Common symptoms that may affect driving include the following:



  • Sensory problems such as numbness or tingling in the hands and feet
  • Visual problems such as blurred or double vision, temporary loss of visual, for example optic neuritis
  • Fatigue
  • Loss of muscle strength and dexterity
  • Problems with balance and coordination
  • Muscle stiffness and spasms including tightening or rigidity
  • Difficulty with memory, concentration, spatial awareness, speed of processing
  • Medications.

The role of the occupational therapist in relation to driving includes the following:



  • Providing information about the law and driving with a long-term neurological condition
  • Providing information about a person’s fitness to drive
  • Identifying the need for referral to a driving assessment centre for comprehensive assessment of driving ability
  • Driver rehabilitation
  • Providing information about vehicle modification
  • Supporting driving cessation.

Driving and the Law


All drivers are legally responsible for informing the Driver and Vehicle Licensing Agency (DVLA) following diagnosis with MS, MND, HD or Parkinson’s. However not all drivers notify the DVLA when there is cause for concern. For some it is because of reduced insight into the effects of their medical condition; for others, there is a fear of losing their licence and their independence, and some people are genuinely not aware that they need to inform DVLA (College of Occupational Therapists, 2012).


Occupational therapists are now able to report concerns directly to the DVLA although it is more likely that the occupational therapist will support the person living with a long-term neurological condition to understand their legal responsibilities in the first instance (College of Occupational Therapists, 2012). Sharing confidential information with an outside agency needs to be considered carefully as occupational therapists are required to protect the person living with a long-term neurological condition’s right to confidentiality (College of Occupational Therapists, 2012). However in these circumstances there is also a duty to protect the general public (College of Occupational Therapists, 2010). Occupational therapists should discuss their concerns with the person living with a long-term neurological condition and seek to obtain consent to disclose relevant information to the DVLA (College of Occupational Therapists, 2012).


Fitness to drive


Once the person living with a long-term neurological condition has informed the DVLA about their medical condition, their fitness to drive will be assessed and they may be asked to have a medical examination. A decision will then be made with the following recommendations:



  • Allowed to keep a full licence
  • Given a temporary licence, valid for 1–3 years
  • Given a licence to drive an automatic car or one with specialist controls
  • In extreme cases, refused a licence.

Driver rehabilitation


Occupational therapists support safe driving through rehabilitation of cognitive, motor and perceptual skills (CAOT, 2009). People living with a long-term neurological condition may also be encouraged to make some practical changes to the way they drive including (Rica, 2013):



  • Avoiding driving in certain conditions, for example in the dark, when it is raining and at busy times of the day
  • Slowing down to increase reaction time
  • Taking extra care when approaching a junction or a hazard
  • Taking time when moving off, making sure all surrounding areas have been checked
  • Avoiding pressure from other drivers
  • Planning journeys to avoid pressure
  • Planning the route, including consideration of options for parking your route
  • Allowing time for rests
  • Feeling positive about stopping – as long as it is safe to do so!

Vehicle modification


Many modern cars have features which are designed to make them easier and safer to drive which can include the following (Rica, 2013):



  • Variable power steering
  • Brake assist and traction control
  • Automatic or semi-automatic gear boxes
  • Cruise control
  • Hill start assist
  • Automatic headlights and wipers
  • Parking sensors and cameras.

The following accessories and adaptations can also help make it easier to drive (Rica, 2013):



  • Panoramic rear-view mirrors
  • Coloured stickers to mark speed on the speedometer
  • Steering balls or spinners to support one-handed steering
  • Adjustable seating with lumbar support
  • Adjustable steering wheel position
  • Automatic transmission reduces gear changes
  • Brake assistance
  • Hand controls
  • Steering column-mounted controls
  • Modified door hinges or extensions to seat runners to create more space for getting in and out of the vehicle
  • Height adjustable, swivel mechanisms or replacement seats

Supporting driving cessation


If the person living with a long-term neurological condition is finding it difficult to drive or feeling concerned about their own and other’s safety, they may choose to drive less or even stop driving (Rica, 2013). Driving cessation can lead to restricted community engagement (Marottoli et al., 2000), changes to identity and self-esteem (Eisenhandler, 1990) and increased depressive symptomatology (Ragland et al., 2005). Driving cessation can impact upon quality of life, participation in life roles, independence and safety (Ralston et al., 2001).


In general, driving cessation is a gradual, voluntary process (Liddle and McKenna, 2003). While a small proportion of people living with a long-term neurological condition cease driving because they have their licences revoked, most do so for reasons related to health status, advice from family and feeling uncomfortable or anxious with the driving role (Liddle and McKenna, 2003). The difficulties which contribute to driving cessation can of course create challenges to the use of alternative forms of transport such as mobility problems making it difficult to use public transport (Liddle and McKenna, 2003). This may significantly impact on social and leisure activities and participation (Liddle and McKenna, 2003). Reliance on informal carers for transport may also place additional burden and may further restrict the opportunities for engagement and participation (Liddle and McKenna, 2003).


Driving cessation therefore requires a planned and structured approach to ensure the transition to non-driver status is minimally disruptive to occupational performance, identity and self-esteem. The occupational therapist has a key role to play in supporting people living with long-term neurological conditions to prepare for this adjustment.


9.7 Caregiving


There are approximately 850 000 people in the United Kingdom looking after someone living with a long-term neurological condition (Jackson et al., 2013). The primary carers of people with a long-term neurological condition are usually a family member and mainly a spouse (Aoun et al., 2011). They spend on average between 20 and 50 hours per week caring for their family member (Jackson et al., 2013).


9.7.1 Impact on family and carers


Experiences of carers vary widely (Martinez-Martin et al., 2008; Schrag et al., 2006), with some carers adapting and coping well throughout the disease (Abendroth et al., 2012). However for others, caring for a person living with a long-term neurological condition can have a variety of negative physical, psychological, social and financial consequences for carers that may challenge their ability to continue their caring role (Greenwell et al., 2015).


Carers of people living with a long-term neurological condition can be faced with increased worry and uncertainty over their future; feelings of guilt, grief and frustration; negative changes in lifestyle, including restricted work and social activities; and a worsening financial situation, mainly through loss of earnings (Greenwell et al., 2015). The overall impact can lead to poor psychosocial outcomes including reduced quality of life, emotional and financial strain, fatigue, sleep disturbances, social isolation and an increased risk of neuropsychiatric symptoms and chronic illness (Greenwell et al., 2015).


Challenges also occur due to the sometimes unremitting commitment involved in the care of a person living with a long-term neurological condition involving responsibilities such as providing emotional support, controlling feeding and fluids, learning new strategies for communication as speech deteriorates, striving to plan ahead in a situation of constant change, managing medical equipment and increasing demands in relation to moving and handling (Birks, 2008).


Carers face daily changes as well as long-term adjustments as they worry about illness progression and the overall well-being of the family (Bromberg and Forshew, 2002; Trail et al., 2004), changes in family roles (Hughes et al., 2005; Lackey and Gates, 2001), loss of sexual relationships (Kaub-Wittemer et al., 2003; O’Connor et al., 2008), loss of a reciprocal relationship with spouse carers (Ray and Street, 2007) and, in some situations, being blamed by other family members for inadequate care (Martin and Turnbull, 2001).


9.7.2 Burden of care


Burden of care is defined as ‘the extent to which the caregivers perceive their health, social life and financial status are suffering because of their caregiving experience’ (Zarit et al., 1980). Recent studies of carers of people with Parkinson’s have highlighted that carer age and length of time in the caregiving role are of importance, and females appear more vulnerable in their caring role than males (Morley et al., 2012). The intensity of caregiving (informal hours and years of caregiving) was shown to correlate with carer burden (Greenwell et al., 2015).


Factors which contribute to increased carer strain include the following:



  • Losing the ability to walk
  • Increased amount of time spent on toileting, bathing, dressing, administering medications and feeding (Chio et al., 2006)
  • Respiratory and breathing difficulties (Gysels and Higginson, 2009)
  • Feeling ill-prepared to cope, causing anxiety, depression and distress
  • Behavioural problems (Schumacher et al., 2006).

At the end of life, as family carers lose the ability to interact with their loved ones, they may begin to struggle with meaning and feel powerless (Rabkin et al., 2006). There is increasing evidence to indicate that people with a long-term neurological condition and their family carers do not always hold the same attitudes or beliefs about care (Bolmsjo and Hermeren, 2003) or agree about treatment course or end-of-life decision-making (Trail et al., 2003). People living with a long-term neurological condition may refuse life-sustaining treatments, such as tracheostomy or assisted ventilation (Kaub-Wittemer et al., 2003) or may have an interest in hastening death, all of which can cause distress for carers (Rabkin et al., 2000). The impact of long-term neurological conditions can continue to affect families after death, despite the end to caregiving (Aoun et al., 2013). In bereavement, carers can experience lasting emotional impacts, including sadness, fear, frustration, hatred and anger, depression and, for some, hopelessness (Hebert et al., 2005).


9.7.3 Supporting carers


Occupational therapists can support carers in a number of ways by:



  • Providing direct support to family carers to meet their practical and emotional needs
  • Providing interventions that support the existential and spiritual concerns of people with long-term neurological conditions and their family carers
  • Delivering compassionate care at the time of diagnosis and throughout the disease trajectory
  • Providing practical advice and guidance on symptom management, technology and meeting personal care needs
  • Open and genuine communications to share concerns and identify needs.

9.7.4 Supporting the needs of young carers


Being a young carer is much more common than perhaps thought with at least 175 000 in the United Kingdom (MS Society, 2008). Young carers help with many aspects of daily life including the following:



  • Housework
  • Household shopping
  • Cooking
  • Looking after siblings
  • Looking after the person living with a long-term neurological condition
  • Supporting other members of the family.

Young carers may require a different level of support due to the following reasons:



  • Adjustment to the diagnosis of a family member with a long-term neurological condition
  • Impact on parental relationships
  • An unwillingness to ‘burden’ family member with their own needs
  • The impact on their own occupational performance and ability to engage in meaningful occupations
  • Achieving occupational balance between caring role and schoolwork
  • Emotional challenges including anger and frustration, worry, guilt, jealousy, loneliness, sadness and embarrassment
  • Financial pressures
  • Social pressures including bullying as their family is seen as ‘different’ or becoming the bully as a way to vent anger and frustration (MS Society, 2008).

Occupational therapists can support young carers by:



  • Talking to them and helping them to understand the medical condition
  • Talking to them about their own needs
  • Recognising risks factors
  • Providing practical support, for example equipment or adaptations
  • Promoting a healthy lifestyle including eating properly and exercise
  • Providing information and support.

9.8 Psychosocial adjustment


The majority of people living with a long-term neurological condition make a positive adjustment as indicated by maintenance of a positive self-concept despite the chronic and progressive nature of their diseases (Brooks and Matson, 1982). Psychosocial well-being reflects a position in which the person living with a long-term neurological condition perceives a state of harmony in all aspects of their life (Orem, 1985). Models of psychosocial adaptation describe three stages of reactions (Livneh, 2001) as follows:



  1. Earlier reactions: (shock, anxiety and denial)
  2. Intermediate reactions (depression, internalised anger and externalised anger)
  3. Later reactions (acknowledgement and adjustment).

Psychosocial adaptation involves a continuous process of adjustment which allows people to work through the initial shock and uncertainty of a diagnosis discarding both false hope and feelings of hopelessness until they can attribute meaning and purpose to living with the limitations imposed by the illness (Feldman, 1974).


Major psychosocial adjustment most commonly occurs within the first 10 years of diagnosis with a long-term neurological condition (Brooks and Matson, 1982). Physical health status has the greatest influence on psychosocial adaptation affecting self-confidence, self-reliance and social interactions (Zeldow and Pavlou, 1984). The greater the impact of a long-term neurological condition on a person’s ability to participate in everyday activities, the more likely the person is to demonstrate a lower self-concept (Brooks and Matson, 1982). Uncertainty in disease course also contributes to difficulties in adjustment (Antonak and Livneh, 1995).

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Feb 18, 2017 | Posted by in NEUROLOGY | Comments Off on 9: Living with a long-term neurological condition

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