Motivation and emotion/Book/2014/Dementia care motivation

Dementia care motivation:
What motivates people to care for others with dementia?

Multimedia presentation (5 min)

Overview

Figure 1. Fostering and maintaining motivation when caring for our elderly in the face of dementia. _{Photo by Chalmers Butterfield.}

There are only 4 kinds of people in the world - Those who have been caregivers - Those who are currently caregivers - Those who will be caregivers - And those who will need caregivers. Rosalyn Carter - alzheimer'sreadingroom.com

It is predicted that by the year 2020 there will be approximately 400,000 Australians with dementia(AIHW, 2012). This growth can be attributed to Australia’s ageing population which has experienced consistent increases over the past 100 years. It is estimated that by 2050 Australia may have 20% of its population over the age of 65. As the population ages so too does the incidence of age related illnesses including Alzheimer’s and Parkinson’s disease (Petsko, 2008). In 2011 the Australian Government’s Institute of Health and Welfare (2012) estimated 298,000 people had dementia symptoms and it was determined that $2 billion was directly attributed to dementia health care in the 2009-10 period.

The Australian health care system currently services residential aged care facilitates and community aged care to the tune of $1.5 billion. These industries in 2003, employed 116,000 care workers. Whilst this makes up a large proportion of carers it was estimated in 2011 there were another 200,000 informal carers, usually co-residing to provide primary care for those with dementia (AIHW, 2012). In light of these growth areas in aged care, the need for qualified, sensitive and motivated care workers will be essential.

Dementia Symptoms

Dementia is a descriptive term for a variety of symptoms of mental and physical decline. These symptoms can be attributed to over 60 conditions and illnesses. Examples of treatable disorders producing dementia like symptoms are: strokes, depression, alcoholism, infections, hormone disorders and even nutritional deficiencies (Gustafson, 1996). Alzheimer's disease is a degenerative brain disorder, it is one of the more common diseases associated with symptoms of dementia. Neurological degeneration in brain tissue affects signalling between brain cells blocking messages and eventually killing the cells. This affects function in different areas of the brain and the progression of dementia goes through an identified 4 phases. (Khachaturian, 1985). The period between diagnosis of dementia and death averages between 6 to 12 years depending on what is causing the dementia. Periods of 2 to 20 years are not unusual and the severe effects of the last stage can last three years or more. (Chang, 2007)

Stage of dementia

Stage 1

The initial noticeable dementia symptoms include, short term memory loss that renders the sufferer annoyed and frustrated as family and friends begin to notice the change. They will often ask the same question over and over or they may lose a simple word they are looking for. When in unfamiliar settings and meeting unfamiliar people confusion becomes apparent. Names may elude them and losing significant items become frequent occurrences. Behavioural changes in response to the symptoms of delusions, hallucinations and confusion are; dis-inhibition, depression, agitation and even aggression and violence. (Dementiacareaustralia.org.au, 2014, Chang, 2007)

Stage 2

A seemingly more “relaxed” attitude from sufferers becomes apparent, although they tend to withdraw and become more preoccupied with memories from long past. Sentence construction may become difficult and making up words to replace the usual reference may happen. Typically throughout this stage dementia affects the person’s ability to correctly identify generations in the family – mixing up their grandchildren with a long gone relative. Becoming distracted when performing a task becomes evident at this stage, for example; starting to unpack the dishwasher, become distracted, and replace dishes back in the dishwasher. Physical deficits are not yet noticeable during this stage. (Dementiacareaustralia.org.au, 2014, Chang, 2007)

Stage 3

Dementia symptoms render the sufferer more withdrawn and preoccupied with the past. This is when “wandering” is prone to occur. Language is affected dramatically and the person may use singular word responses or requests and gestures to communicate. Ritualistic movements comfort the sufferer, often representing activities they used to perform during a time when others relied upon them. (Dementiacareaustralia.org.au, 2014, Chang, 2007)

Stage 4

Lastly, dementia symptoms include a complete disconnection from social engagement even with family and significant others. All the senses are still functioning but the person no longer relates to those around them. Physically the body shuts down, facial movement, eating, toileting are no longer under control. Jerking and stiffening of limbs and even full body contraction at the end stage are common symptoms. (Dementiacareaustralia.org.au, 2014, Chang, 2007)

Patients with these symptoms require considerable care and whether that care is provided at home or in a professional care facility, it is the decisions of those who chose to care and the long term effects of dementia symptoms on carer’s motivations that will be discussed.

Prevalence of dementia in the Australian community

Dementia statistics are elusive, this is due in part due to the progressive nature of the dementia, the co-morbidity that often occurs with dementia and the perception that it is “old age” setting in and a normal part of the aging process. Thus, under-diagnosis and under-disclosure of mild to moderate dementias makes prevalence statistics difficult to determine. Estimated prevalence of dementia in 2011 when the Alzheimer’s Disease International (ADI) prevalence rates are applied to 2011 ABS population estimates there were 298,000 Australians with dementia in 2011. The majority (62%) of these were women. The data also suggest that in 2011: * of all Australians, 1 in 77 (1.3%) had dementia * of all Australians aged 65 and over, 1 in 11 (9%) had dementia * of all Australians aged 85 and over, 3 in 10 (30%) had dementia. Source AIHW - Dementia in Australia Report (2012)

Informal carers - a perspective

Figure 2. 39,700 carers, co-reside with the person they care for in Australia, were estimated in 2009 (AIHW, 2012) _{Photo by Lumaxart}.

Informal care is also known as family care, community or home care and is more prevalent in the community than residential care. The AIHW (2012) report there to be 208,000 people with dementia living in informal home care. At that time there were an estimated 39,700 carers co-residing – living in the home with the dementia sufferer.

Without this support, people with dementia would be institutionalised far earlier which would place greater burden on an already strained aged care system. Whilst dementia care happens in the home it frees up formal care environments for high care recipients. Informal carers often continue in their role after the dementia sufferer is admitted to formal care institutions.

Carer motivations

The main reasons people reported in the ABS Survey of Disability and Aged Care (2012) as their motivation to care for someone with dementia is family responsibility (63%), a feeling that they could do the job better than others (50%), feeling an emotional obligation (41%), there were no other family or friends able or willing take the carers role (32% for those caring for someone 65 years or over). Other reasons given are a sense of love or reciprocity, guilt, social pressure and in a few instances greed was a motivator (Brodaty & Donkin, 2009.) Overall a “sense of duty” is the most common theme.

Table 1. Reasons for taking on caring role: Primary carers of people with dementia 2009 (per cent)

Reasons for taking on Carer Role	Primary Carers of People with Dementia
Family responsibility	59.8
Could provide better care than someone else	47.2
Emotional obligation	44.3
No other family or friends available	31.7
No other family or friends willing	23.7
Had no other choice	22.0
Alternative care too costly	*21.4
Other reasons	*20.2
Totala	100.0

_{aThe sum of the reasons exceeds the total since any one primary carer could report multiple reasons. * Estimates not recommended for general use}

Source: AIHW analysis of the ABS 2009 Survey of Disability, Ageing and Carers confidentialised unit record file

Against all odds

The insidious nature of dementia and its progression render a large burden upon the carer, particularly with their time. Dementia often requires 24 hour vigilance as the disease affects sleep patterns, instigates wandering and not only does that caregiver provide the usual support but they have behavioural concerns to deal with as well. The ABS (2003) reports that most informal carers provided dementia care for between 1 and 4 years, however 22% had been caring for more than 10 years. This level of care can mean social isolation, financial strain, physical strain and psychological vulnerability leading to effects of depression and anxiety.

The AIHW (2012) reports that primary carers of people with dementia were more likely than those of people without dementia to access respite care due to emotional stress and strain. Other reasons for respite use were that the care recipient had increasing care needs, that the carer had employment issues and that the carer needed time to pursue their usual activities

Professional carers - a perspective

The National Institute of Labour Studies (NILS) surveyed residential aged care workers in 2003 and found there were 76,006 direct care employees in formal aged care across Australia. Of those 16,265 were registered nurses, 10,945 were enrolled nurses, 5,776 allied health workers and another 42,943 were personal care workers.

Dementia care in aged care facilities has been recognised as an increasing challenge for the sector. It represents the major reason why people seek admittance and it has been estimated that currently 50% of residents have dementia symptoms (Willett, 2013). With these numbers set to rise significantly, the aged care workforce will need to respond in kind. It has been identified the rate of professional carers leaving the aged care sector is rising in the higher level nursing areas (Nationalseniors.com, 2010 p. 16). Between 2003 and 2012 registered nurses dwindled by 14%. (Table 2.) Due to these concerning trends work has been done to identify methods for increasing recruitment and alleviating attrition rates for formal aged care workers. One of the more significant aged care workforce issues is finding people who want to work in the industry, particularly registered nurses and others with higher qualifications.

Table 2. Full-time equivalent direct care employees in the residential aged care workforce, by occupation: 2003, 2007 and 2012 (estimated FTE and per cent)

Occupation	2003	2007	2012
Registered Nurse	16,265 (21.4%)	13,247 (16.8%)	13,939 (14.7%)
Enrolled Nurse	10,945 (14.4%)	9,856 (12.5%)	10,999 (11.6%)
Personal Care Attendant	42,943 (56.5%)	50,542 (64.1%)	64,669 (68.2%)
Allied Health Professional/Assistant	5,776 (7.6%)	5,204 (6.6%)	5,026 (5.3%)
Total number employees	76,006 (100%)	78,849 (100%)	94,823 (Counting 190 Nurse Practitioners - 100%)

Source: Census of Residential Aged Care Facilities

Figure 3. Caring for our elderly - what motivates these professionals. _{Photo by I Craig.}

Carer motivations

Some of the reported reasons people choose to work in the aged care sector are interest in older adults, personal experience caring for older people and employment experience caring for older adults. Reported satisfaction with care work includes recognition from residents and the organisation, the authority to judge resident care and positive interactions with other nurses. (Firth & Britton, 1989). Student nurses are likely to choose working in aged care facilities if they've had positive experiences with their mentors, clinical involvement and have had the opportunity to have a broad learning experience with varied patient conditions.

Against all odds

The aged care sector can be a less than attractive proposition when the work is perceived as unrelenting, understaffed and that the organisation is not supportive. The residents, compared with 2003, have higher need care requirements they are more co-morbid, more confronting and present with dementia more than ever. The effects of the difficult work nature have seen low morale and high rates of sick leave and absenteeism in the field. (Stein, 2002). Nurses working full time in the aged care sector earn, on average, $340 per week less than their counterparts in other nursing environments. Care work is psychologically demanding as it requires caring for residents, dealing with their families, staff and management. This can have effects of exhaustion in the emotional, cognitive and physical reserves of the worker. Leiter & Schaufeli, (1996) identified burnout in aged care as the highest in the health sector. The motivation of these carers is greatly affected by burnout and has led to exhaustion, depression and long absences from work. (Firth & Britton, 1989)

Self Determination Theory (SDT)

Self-determination theory is a meta-theory framework from which human drive can be examined.

It theorises that psychological needs be met for psychological growth and well-being. (Ryan & Deci 2000).The fundamental origins of human motivation are ascribed as intrinsic and extrinsic to the person. Intrinsic motivation are the internal needs, wants and desires of an individual moving them to act and extrinsic motivations being external drivers such as incentive systems.

Intrinsic motivations may be tempered by social context either supporting or not supporting it and extrinsic motivations can be assimilated or integrated by supportive environments to enhance the individual’s likelihood of wanting to attend to a situation or task.

The psychological needs of autonomy, competence and relatedness and how these interplay with intrinsic and extrinsic motivation, along with the social context it is found in, are indicative of human thought, feelings and action. When these interact in a harmonious way psychological well-being is enhanced. Further, one’s mental health contributes to physical well-being, and it is self-determined motivation that instigates this constructive interaction. (Vallerand, Koestner & Pelletier, 2008)

Autonomy

An individual’s experience of autonomy is having their own control or ownership over a situation or tasks and making decisions about them. Environments where autonomous motivations, (intrinsic, integrated or identified), and supports of this, lead to increased well-being and effectiveness than controlled motivations. (Moran, Diefendorff, Kim & Lui , 2012)

Competence

Competence is and inward confidence of ability, (or perceived ability) reflected in a task or situation. It is re-enforced by positive feedback from producing effective results.

Relatedness

Relatedness refers to the relationship with the social context, the people in it and where they fit. When in these situations people function better, they are more resilient and report fewer problems with relationships. Relationships that do not involve caring, liking, accepting and valuing do not satisfy the need for relatedness. (Reeve, 2009)

Research in SDT has included many domains such as: education, sport, religion, organisations, health and virtual environments, in media, close relationships and psychotherapy. In each of these areas, controlling versus autonomy-accommodating settings has been investigated to determine functioning, wellness, performance and persistence of individuals and teams. (Moran et al. 2012)

Self-Determination Theory in dementia care

Self-Determination Theory and Informal Carers Motivators Psychological need supported Family responsibility Autonomy, Competence, Relatedness Can do a better job Competence Emotional obligation Relatedness No-one else available or willing Extrinsic - integrated to Intrinsic from Relatedness No other choice Extrinsic - integrated to Intrinsic from Relatedness De-motivators - Carer Burden Psychological need negatively affected Isolation Relatedness Sleep deprivation Competence, Autonomy Financial strain (Extrinsic) Physical strain Competence, Autonomy

Self-Determination and Formal Carers Motivators Psychological need supported Interest in older people Intrinsic, competence Personal experience caring for older people Competence Experience in the formal care environment Developing confidence Workplace recognition Relatedness, Competence, leading to Autonomy Authority to judge care for residents Autonomy, Competence De-motivators Workplace/carer Burden Psychological need negatively affected Understaffed Competence, Relatedness Lower wages than nurses in other sectors (Extrinsic) Quality time with residents affected Relatedness, Autonomy, competence Unsupported by organisation Relatedness

One could say that caring for our young, elderly and infirmed is an intrinsic human response which fulfils our nurturing characteristics. Those who choose a career in caring industries; community service, health or education could be determined as fulfilling their intrinsic motivations to do so. An innate interest in working with and helping others has led them to that career. In the case of dementia, often there are environmental and personal barriers to maintaining motivation. In the case of a family carer, who may not have chosen that path but were the only one able to care, motivation for the task may not be particularly high to begin with.

Motivation and informal carers - access and barriers

The environment of the family carer facilitates autonomy in their role and a feeling of satisfaction and control can be experienced. Autonomy may be affected by the behavioural expressions of their charge. One behaviour is wandering, which may cause distress for both the carer and the dementia sufferer. Attempting to leave the house during the night may causing sleep deprivation and stress for the carer. If the dementia patient were to actually leave the home the stress would increase greatly for both parties. Alleviating stress for the carer may mean accessing respite care, or having someone help them care.

Competence would be achieved for the informal carer due to their close relationship with their relative or friend. They would know them well enough to be able to feel confident in their role although would be challenged in this area when dementia symptoms of confusion and forgetfulness occur.

Relatedness would be a high motivator for the informal carer again due to their close relationship with the person. Unfortunately this is an area where dissatisfaction may occur due to the carer’s isolation from their usual pursuits and friends. Isolation has been determined one of the biggest difficulties for those caring for someone with dementia. Community support for carers has become a high priority in recent years particularly with online accessibility rising. Communities need to make respite care for these people a priority to alleviate burnout, stress and de-motivation for their role.

Accessible community support for informal carers will assist in lifting carer burden that is exacerbated by isolation. Better physical and psychological health outcomes will occur if carers are assisted to maintain their internal needs of autonomy, competence and relatedness in the face of the difficulties of caring for someone with dementia.

Motivation and formal carers - access and barriers

Professional careers in care of the elderly and those with dementia would have been attracted to the industry from an intrinsic perspective, particularly noting the key motivator for these careers as an “interest in older people”. Further motivating factors are involved when choosing a career in the field. Recognition for work is mentioned as a motivator and also relates to feedback which in turn facilitates enhanced motivation. (Ryan & Deci, 2000).

The motivators of developing skills and experience in the workplace encompass competence as an internal drive along with developing an autonomous aspect to their work. These perspectives encourage motivation and satisfaction.

Relatedness in the aged care sector would be addressed through the work team, supporting each other and sharing the responsibilities of the workplace. Stress on relatedness as a motivator may happen due to the workplace burdens of under-staffing and feelings of not being supported by the organisation. Lower wages identified in the aged care industry may also give a feedback or reward message that performance is not worthy. Residents, depending on the extent of their dementia symptoms may be beyond providing relational interactions and therefore relatedness is not being satisfied for the carers.

By the environment (aged care facilities) supporting the psychological needs of caring staff for autonomy, competence and relatedness they will foster and maintain motivation, engagement and satisfaction in their workforce. This will in turn decrease burnout, absenteeism and stress and lift the profile of the industry.

Conclusion

The great majority of us will grow old and as our chances of growing to ages that generations before us did not, so do our chances of living with dementia. Whether it is us or whether it is someone we care for. To have an understanding of the symptoms and their progression can give all of us a sense of internal competence which enhances our intrinsic motivation. In the interests of providing excellent care from motivated carers, Self-determination theory has been an enlightening framework to attribute the motivators and de-motivators of carers in our community.

See also

1. Dementia - Diagnosis (Wikipedia)
2. Dementia - Motivation (Wikipedia)
3. Dementia - aged care workforce (Wikipedia)
4. Dementia Alzheimer's disease (Wikiversity)

References

Australian Bureau of Statistics. (2012) Disability, Ageing and Carers, Australia: Summary of Findings, Report 4430.0 Survey for Disability and Aged Care. Retrieved from:http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/07C13530A0B6717DCA257D57001F162A?opendocument\Australian

Australian Government, Australian Institute of Health and Welfare (2012). Dementia in Australia. Cat. no. AGE 70. Canberra: AIHW.

Australian Government, Australian Institute of Health and Welfare: Aging, Disability and Carers statistical reports. Retrieved from: http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=6442454188

Brogaty, H. Donkin, M. (2009) Family caregivers of people with dementia. Dialogues in Clinical Neuroscience. 11 2 p 217-228

Chang, E. (2007) Dementia information for carers, families and friends of people with severe end stage dementia. Published by University of Western Sydney. Retrieved from: http://www.hnehealth.nsw.gov.au/__data/assets/pdf_file/0008/71891/Dementia_book.pdf

Commonwealth of Australia. Department of Health and Ageing (2002). Recruitment and retention of nurses in residential aged care. Retrieved from: http://www.health.gov.au/internet/main/publishing.nsf/content/ageing-workforce-recruit.htm/$FILE/latroberesp.pdf

Dementiacareaustralia.org.au Symptoms and stages of dementia. © 2014 Dementia Care Australia ABN: 57 062 386 216 Retrieved from: http://www.dementiacareaustralia.com/index.php/library/symptoms-and-stages-of-dementia.html

Australian Institute of Health and Welfare Dementia in Australia (2012) Dementia in Australia. ISBN 978-1-74249-349-7

Firth, H. and Britton, P. (1989) Burnout, absence and turnover amongst British nursing staff. Journal of Occupational and Organisational Psychology. 62, 1 p55-59

Gustafson, L. (1996), What is dementia? Acta Neurologica Scandinavica, 94: p22–24. doi: 10.1111/j.1600-0404.1996.tb00367.x

Khachaturian, Z. (1985) Diagnosis of Alzheimer's Disease JAMA Neurology Archives Neurology (Formerly Archives of Neurology) 42(11):1097-1105. doi:10.1001/archneur.1985.04060100083029.

King, d., Mavromaras, K., Wei, Z., He, B., Healy, J., Macaitis, K., Moskos, M., Smith, L. (2012) The Aged Care Workforce 2012. Canberra: Australian Government Department for Health and Aging

Leiter M. and Schaufeli, W 1996. Consistency of the burnout construct across occupations, Anxiety, Stress and Coping 9 p 229-243

Moran, C. Diefendorff, J. Kim, T. and Lui, Z (2012) A profile approach to self-determination theory motivations at work. Journal of Vocational Behaviour. 81, p 354-363

Reeve, J. (2009). Understanding Motivation and Emotion 5th Ed. NJ USA, John Wiley & Sons Inc

Ryan, R. and Deci, E. (2000) Self-determination theory and the facilitation of intrinsic motivation, social development and well-being. American Psychologist. 55, p 68-78

Ryan, R. and Deci, E. (2000) Intrinsic and extrinsic motivations: Classic definitions and new directions. Contemporary Educational Psychology. 25 p 54-67 doi:10.1006/ceps.1999.1020

Stein, I. (2002) Why stay in aged care? Geriaction 20, 3. 5-8

The Australian Institute of Health and Welfare (1998) Nursing Labour Force (28)

National Seniors Australia (2010) The Future of Aged Care Access Economics 2010 Report. Retrieved from: http://nationalseniors.com.au/sites/default/files/Future_of_Aged_Care.pdf

Willet, B. (2013), The future of aged care nursing on Australia, Nursing careers Allied Health www.ncah.cm.au Retrieved from: http://www.ncah.com.au/news-events/the-future-of-aged-care-nursing- -australia/106/

Vallerand, R. Koestner, R. and Pelletier, L. (2008) Reflections on Self-Determination Theory. Canadian Psychology 49, 3, p 257-262

External Links

• The coming neurological epidemic Gregory Petsco (TEDx talk, 2008) (3:51min)
• Dementia Care Australia - You as the carer
• Dementia - Taking care of carers
• Dementia AIHW
• Commonwealth Respite and Carelink Centre Website
• Dementia Education and Training for Carers (DETC)