Measuring Quality of Life ( QoL ) has many challenges as does specifying what QoL means, peculiarly for those with advanced dementedness. The nature of dementedness as an unwellness means that there is a gradual diminution in ability to pass on efficaciously, manage activities of day-to-day populating independently and in 1s ability to grok. ( Alzheimers Society 2007 ) .
This assignment will see how hurting is assessed and managed in advanced dementedness within the attention place scene and the consequence that this can hold on overall quality of life. It will critically analyze what quality of life measuring tools and trouble appraisal tools are available and see mensurating wellness related QoL in relation to trouble, but will besides discourse whether the impact of good hurting direction can better psychological and societal wellbeing. This will be in the context of the work that is carried out by the Care Homes Services squad in Greater Glasgow, and current national policies that are relevant to dementia, in peculiar those that focus on alleviative attention and terminal of life attention.
Where QoL is Supported and Compromised in Practice
There are about 4000 nursing attention place beds within the Greater Glasgow boundary made up of about 70 attention places. The Nursing Homes Medical Practice ( NHMP ) was set up in 2002 with an purpose to supply attention for 80 % of these patients. In March 2011, the NHMP had 2584 patients registered ( NHMP 2011 ) . The pattern has 5 FTE GPs and aˆ¦.. helping pattern GPs. It besides has disposal staff, including a pattern director and a pharmaceutics squad which has 3 pharmaceutics technicians and 1 lead druggist. This is farther complimented by one FTE dietitian and one FTE address and linguistic communication healer. There is besides a close working relationship with the falls bar squad.
The Care Home Liaison Nurse ( CHLN ) squad was established in 2007, and is made up of 14 FTE nurses, including a nurse lead. The CHLNs have duty for all attention place occupants within Greater Glasgow who require nursing attention, hence screen all 4000 beds, giving each nurse an approximative instance burden of 300 patients. The work carried out by the affair nurses regards that of the GPs within the NHMP and besides offers support and advice for the approximative 1400 occupants who have a GP outwith the NHMP. This helps to supply a more holistic attack to care.
The CHLN squad along with alleviative nurse specializers within Greater Glasgow, have about completed a preparation programme back uping all attention place nurses in the metropolis to implement the usage of the Liverpool Care Pathway. The programme includes McKinley pump preparation, confirmation of expected decease information, advanced attention planning and the debut of a Supportive Palliative Action Register ( SPAR ) in each place. More late, the debut of the electronic Palliative Care Summary ( ePCS ) across all GP patterns in Glasgow, has enhanced this further. All of these enterprises have supported QoL at terminal of life and have allowed the attention place staff to implement pattern in a supported environment.
The Scots Government Living and Dying Well papers ( 2008 ) is a national program for alleviative and terminal of life attention in Scotland. This papers recognises the demand for keeping good quality of life at every phase of unwellness by supplying a holistic attack to care. It goes farther to admit the importance of alleviative attention being inclusive for all and appreciates that despite the chief cause of decease in the UK is known to be dementia and infirmity, that proviso of specializer services is most frequently directed towards those with malignant neoplastic disease ( Gold Standards Framework 2005 ) . In add-on, this holistic attack is underpinned by patient centred attention.
In pattern, by following the rules as laid out within the national counsel has ensured that QoL within the attention place sector is supported at terminal of life ( Living and Dying Well 2008 ) and is a good illustration of collaborative working. However, there is inquiry around how QoL is measured and monitored, in peculiar in relation to trouble in advanced dementedness, and this is an country where, at the minute, there is deficiency of grounds as to cognize whether attention is supported or compromised.
A pharmaceutics audit was carried out for the one-fourth August to October 2010 that looked at ordering pattern within the places covered by the NHMP. The audit highlighted that the quarterly spend for paracetamol had increased by 32 % from the old one-fourth, and that the usage of buprenorphine spots had increased by 130 % ( Downes 2011 ) . Presently, buprenorphine is non approved for usage in Scotland ( Scots Medicines Consortium 2011 ) . In add-on to this, there was a lessening in the usage of tramadol, and a 4 % decrease in the usage of quetiapine ( Downes 2011 ) .
Arguably, the ordering tendencies shown supra may foreground better acknowledgment and intervention of hurting within the attention place population, and may besides pull attending to the troubles in handling hurting when it presents as disputing behavior, and hence could account for the crisp addition in patch medicine. ( REF ) . Interestingly, the usage of Fentanyl as a spot medicine has reduced in the same one-fourth which once more may foreground that this frail aged group may non needfully necessitate medicine alleviation at this strength, with the lowest dose buprenorphine spot ( 5mcgs ) , being tantamount to merely 3mg Fentanyls, which is a one-fourth of the strength of the smallest spot dosage ( BNF and other ref ) .
The grounds suggests that the increased spend for paracetamol is due to an addition in suspension medicine ( NHMP 2011 ) . This once more emphasises the specific demands and demands of the attention place population. At the minute nevertheless, the attention places services squad in Glasgow do n’t routinely utilize any signifier of hurting measuring that may offer a better grounds base as to why analgetic prescribing pattern within attention places differs from the general population.
Measuring Quality of Life in Dementia
Figures released by the Alzheimer ‘s Society ( 2007 ) suggest that there are presently around 750,000 people in the UK who have dementia. There is an outlook that this will duplicate over the following 30 old ages to 1.4 million. Of this sum, about 12.5 % will hold terrible, advanced dementedness ( Alzheimer ‘s Society 2007 ) . The figures for Scotland entirely are 72,500 ( alzscot 2011 ) . Furthermore, the Department of Health ( 2009 ) province that one tierce of all people with dementia live in a attention place.
Specifying QoL has proved to be hard due to its nonsubjective and subjective dimensions. Carr et Al ( 2003 ) recognise that our perceptual experiences and responses to life experience and wellness will alter over clip, foregrounding the dynamic nature of what is meant by quality of life. The World Health Organisation defines QoL in a much broader sense by taking into consideration civilization and values. They describe it as:
“ aˆ¦an person ‘s perceptual experience of their place in life in the context of the civilization and value systems in which they live. . . . .it is a wide ranging construct affected in a complex manner by the individual ‘s physical wellness, psychological province, degree of independency, societal relationships, and their relationships to outstanding characteristics of their environment ” ( WHOQOL 1993 ) .
Joyce et Al ( 2003 ) offer a theory based method for the rating of single quality of life. This paper discusses the importance of being able to mensurate and specify single quality of life ( IQoL ) by proposing that in order to accomplish this, there needs to be a differentiation made between nomothetic and idiographic scientific discipline. Nomothetic scientific discipline suggests that the rules can be applied to all and are easy quotable, with idiographic scientific discipline concentrating on alone traits of persons that are less likely to be perennial. The difference between the 2 scientific disciplines was foremost described by Aristotle ( Nagel 1961 ) . It besides recognises response displacement, whereby dynamic concepts change over clip. Illness flights vary between conditions therefore the construct of response displacement plays an of import portion in appraisal of quality of life. This theory suggests that an single response will change from twenty-four hours to twenty-four hours, giving different quality results when QoL is measured ( Carr et al 2003 ) .
There is frequently the premise made that deteriorating wellness and knowledge consequences in a decrease in overall quality of life, and this may be more evident when wellness related quality of life is measured on its ain. However, there is research to propose that this is non the instance. Albrecht and Deviliger ( 1999 ) discourse the disablement paradox whereby people with terrible disablements frequently report their quality of life to be good, nevertheless others may do opinions that quality of life for that individual with the disablement must be hapless. This raises some concern around placeholder evaluation tools that are used to mensurate quality of life because arguably, the perceptual experiences of the individual transporting out the measuring will act upon the consequence.
In pattern, health care professionals often make premises about the quality of life of their patients. Addington-Hall and Kalra ( 2001 ) recognise that proxies, whether that be caregiver or wellness professional, can supply utile information chiefly on the discernible facets of quality of life, nevertheless besides recognises that wellness professionals are more likely to rate QoL as being worse than the patient perceives it to be. They go farther to emphasize the importance of deriving information in relation to QoL in those with terrible cognitive damage, because arguably this information is required in order to more accurately inform clinical determination devising.
There are many aspects to QoL and it is the interaction between all of these things that lead any single to make up one’s mind what their QoL is. To set this into the context of advanced dementedness, the challenges of accurately mensurating quality of life become even greater. Wilson and Cleary ( 1995 ) discourse a conceptual theoretical account of mensurating wellness related QoL proposing that there are 5 countries to see. These are biological and physiological factors, symptoms, operation, general wellness perceptual experiences and overall quality of life. If we are to look farther at symptoms, Wilson and Cleary suggest that the definition of a symptom is ;
“ . . a patient ‘s perceptual experience of an unnatural, physical, emotional or cognitive province ” ( Wilson and Cleary 1995 ) .
If this is so to be put into the context of advanced dementedness, it is apparent that the chief concern is frequently the inability of the individual to verbalize and pass on their ain demands, doing it necessary to mensurate QoL by placeholder. This so removes the subjective component that is gained from the individual mensurating their ain QoL ( Carr et al 2003 ) . Arguably, to acquire the most accurate indicant of QoL, both objectiveness and subjectiveness are required because they are affected by one another ( Bowling and Gabriel 2004 ) . This theory is backed by Thompson and Kingston ( 2004 ) in relation to dementia.
Ready and Ott ( 2003 ) did a comparing and review of 9 quality of life steps for dementedness. They found that Lawton ‘s theoretical account of QoL in dementedness had a important influence on the conceptualization of QoL. Where Wilson and Cleary ( 1995 ) offer a generic conceptual theoretical account, Lawton provides a theoretical account specific to dementia ( Lawton 1994 ; 1997 ; 1999 ) . It has both subjective and nonsubjective constituents to it and is split into 4 spheres. These are nonsubjective environment, behavioral competency, psychological well being and perceived quality of life.
Determining and mensurating QoL in those with advanced dementedness can be really hard, nevertheless this does n’t alter the clinical importance of cognizing what determines QoL in this specific group, and as already discussed is steadfastly embedded in national wellness and societal policies ( National Healthcare Quality Strategy for NHSScotland 2010 ; Living and Dying good 2008 ; Better Health, Better Care day of the month, Scots Dementia Strategy day of the month ) .
There are surveies that suggest that there is a direct nexus between hurting and a decreased QoL in advanced dementedness ( Cavalieri 2007 ; Caltagirone et al 2010 ) , and besides research to propose that good hurting direction does so better wellness related QoL ( Manfredi et al 2008 ; Chibnall et al 2005 and Douzijan et al 1998 ) . Manfredi et Al ( 2008 ) carried out research which proved that the usage of long moving opioid drugs can cut down the frequence of agitation. This was peculiarly apparent in those over the age of 85 old ages with advanced dementedness. Furthermore, Chibnall et Al ( 2005 ) has shown that regular usage of aminophicen ( paracetamol ) improved well-being and reduced the demand for psychoactive medicine, hence bettering psychological and societal facets of QoL. Additionally, this research suggests that liver map remained unchanged throughout the class of the intervention.
The inability for person with advanced dementedness to gestate hurting, is arguably one of the chief causes of unnatural behaviors, and besides of increased depressive unwellness and backdown from socialization. This theory is backed by Shega et Al ( 2004 ) and Feldt ( 2000 ) . In add-on, other symptoms that have shown to be pain related that have a direct consequence on QoL are hapless sleep quality, decrease in appetency and backdown from activities of day-to-day life ( ADL ) ( Cipher and Clifford 2004 ; Cohen-Mansfield et Al 1990 ) . Interestingly, research by Cipher and Clifford ( 2004 ) shows that hurting does non hold a direct consequence on QoL, but instead that it is the manner in which hurting can act upon behavioral perturbation and depression that so affects ADL. It is so the alterations in ADL that correlative with overall QoL.
Reappraisal of Quality of Life Measures for Advanced Dementia
The Alzheimer ‘s Society ( 2007 ) recognises that measuring quality of life in people with terrible dementedness is wholly different than for those with mild to chair dementedness. This is chiefly due to communicating and comprehension troubles in terrible dementedness.
There have been reappraisals carried out by Ettema et Al ( 2005 ) and Ready and Ott ( 2003 ) of dementedness specific tools. Ettema et al identified 6 tools and Ready and Ott identified 9. Five of the tools identified are in both reappraisals. In order to set up which of these tools may be the most appropriate in mensurating QoL in advanced dementedness within the attention place scene and in relation to trouble alleviation, consideration has been given to what phase of the unwellness the instrument is designed for, if it has it been tested in the attention place environment and how its cogency and dependability has been rated.
Six of the 9 tools were identified as being for usage in mild to chair dementedness and are all self study tools which would be unsuitable in the advanced dementedness group being discussed. These are the Dementia-Quality of Life ( D-QOL ) which was developed by Brod et Al ( 1999 ) . It has been adapted by Karim et Al ( 2008 ) for usage in the UK. The Cornell-Brown Scale for Quality of Life in Dementia ( CBS ) was developed by Ready et Al ( 2002 ) and is besides designed for mild to chair dementedness in those life at place, as is the Psychological Wellbeing in Cognitively Impaired Persons ( PWB-CIP ) ( Burgener and Twigg 2002 ) .
The Quality of Life for Dementia ( QOL-D ) tool has been designed for usage in all phases of dementedness but is a self study tool and therefore would be unsuitable in the really advanced phases of unwellness ( Terada et al 2002 ) . The Quality of Life Assessment Schedule ( QOLAS ) has besides been designed as a self study patient questionnaire ( Selai et al 2001 ) .
The Quality of Life in Alzheimer ‘s Disease ( QOL-AD ) ( Logsdon et al 1999 ) was originally designed for usage in mild to chair dementedness, but has since been reviewed by Hoe et Al ( 2005 ) and has shown to be suited in all phases of dementedness. However, once more it is a self study tool.
The three staying tools have shown to be utile in measuring QoL in advanced dementedness where ego coverage can non be used. These are Dementia Care Mapping ( Kitwood and Bredin 1992 ) , Activity and Affect Indicators of QoL ( Albert et al 1996 ) , and Quality of Life in Late Stage Dementia ( QUALID ) ( Weiner et al 2000 ) .
Dementia Care Mapping ( DCM ) is neither a ego evaluation nor a placeholder evaluation, it is an experimental tool. It was developed by Kitwood and Bredin ( 1992 ) for usage in attention places. Powell-Lawton et Al ( 1996 ) suggest that experimental tools can assist to get the better of the troubles with communicating in terrible disablement. It could hence be suggested that it should let for valid and dependable coverage in those with moderate to severe dementedness. Furthermore, Kitwood ( 1989, 1990 and 1997 ) has written extensively about individual centred dementedness attention and describes the psycho-social theories from which DCM was developed. The premiss of individual centred attention is cardinal to current national policy in Scotland for direction of long term conditions, saying that the 6 dimensions of supplying quality proviso are individual centred, safe, effectual, just and timely ( Better Health, Better Care 2008 ) .
The tool steps responses from the patient and besides the behavior of the staff towards the patient. It could be debated that in the attention place scene, it is the relationship between the patient and staff that has the biggest impact on QoL, perchance foregrounding when staff fail to recognize unmet demands of the occupant.
Dementia Care Mapping is an intense appraisal necessitating 5 infinitesimal observations every hr over a 6 hr period. Brooker ( 1995 ) has reported DCM to hold first-class inter-rater dependability. In add-on, DCM has been proven to be a utile tool in mensurating quality of attention in the attention place scene ( Ballard et al 2001 ) . Contrary to this, Fossey et Al ( 2002 ) recognised that DCM describing held limited information about test-retest dependability and cogency when used in the context of single usage as opposed to mensurating overall quality of attention in the attention place scene ; hence farther research was carried out in this country.
The survey involved 123 participants, all with dementedness and all life in the attention place environment. The consequences showed good internal consistence and test-retest dependability was besides reported as good ( P & lt ; 0.0001 ) . Test-restest dependability was carried out on 54 occupants. When mensurating coincident cogency in persons, Fossey et al merely had a little subset of occupants who were willing to take part, which is a failing of the survey, nevertheless the overall good internal consistence and test-retest dependability shows this to be a really utile tool. In add-on to this, the coincident cogency of DCM has besides shown to be important ( P & lt ; 0.001 ) , when used as a tool to mensurate quality of attention as opposed to single usage ( Brooker et al 1998 ) . The chief negative to utilizing DCM is that it is clip consuming, which perchance makes it of less entreaty.
The Activity and Affects Indicator of Quality of Life step ( Albert et al 1996 ) is a proxy evaluation tool and it has been suggested that it is suited for all phases of dementedness. This in itself is interesting and draws attending to the writer ‘s sentiment that even those with mild dementedness may be unable to accurately self study on subjective affairs. However, Weiner et Al ( 2000 ) developed the Quality of Life in Late Stage Dementia ( QUALID ) step utilizing some of the points, making a subset from the Activity and Affects Indicator of Quality of Life ( Ettema et al 2005 ; Ready and Ott 2003 ) .
The QUALID tool is designed to be used in advanced dementedness, in peculiar in the attention place scene. It is a really compendious tool, which is surely a strength of this graduated table and it uses proxy evaluations. It observes emotions and activity that are measured by the chief carer of the individual within the place. Ready and Ott ( 2003 ) report the internal consistence dependability every bit good to excellent.
Dementia and Pain Assessment
Research suggests that hurting is ill recognised and accordingly non suitably treated in the aged, in peculiar amongst those with cognitive damage ( British Pain Society and British Geriatric Society 2007 ) . There is farther grounds that the prevalence of hurting in attention place occupants is between 45-83 % ( Helme and Gibson 2001 ; Proctor and Hirdes 2001 ; Ferrell 1990 ) . In add-on to this, Scherder et Al ( 2005 ) found that, despite pain prevalence now being more widely recognised in this group, surveies have shown that they still receive significantly less anodynes than other groups. This hypothesis is backed by Morrison and Siu ( 2000 ) and Semla et Al ( 1993 ) . The British Pain Society travel farther to foreground the troubles in measuring hurting in terrible cognitive damage and the concern that behavioral reactions that are frequently displayed during episodes of hurting can be misdiagnosed and treated with psychotropic medicines, as opposed to trouble alleviation. Furthermore, there is go oning concern about the negative consequence that overexploitation of psychotropic medicines have on QoL in attention place occupants ( Ballard et al 2010 ) .
In advanced dementedness it becomes progressively difficult to show what could be seen as a normal response to trouble, due in portion to an inability to vocalize and show feelings because of memory loss and loss of opinion ( Herr 2002 ) . Conversely, the behavior that may be displayed when hurting is present may be mistaken for a symptom of dementedness as discussed earlier. ( REF )
A systematic reappraisal of behavioral hurting appraisal tools was carried out by Zwakhalen et Al ( 2006 ) , recognizing that appraisal of hurting is of import in so being able to handle the hurting suitably. The reappraisal identified 29 publications, and from these, 12 hurting tools were recognised. In add-on, Herr et Al ( 2010 ) , reviewed 14 hurting appraisal tools. The 2 reappraisals both concluded that the Pain Assessment Checklist for Seniors with Limited Ability to Communicate ( PACSLAC ) ( ref ) is one of the most appropriate graduated tables available. Both reappraisals used the standards of psychometric qualities, clinical public-service corporation, dependability and cogency. Zwakhalen et Al besides recognised the DOLOPLUS2 ( ref ) as an appropriate tool and Herr et Al recognised the PAIN AD tool as appropriate ( Ref ) . Both reappraisals included the PAIN AD and DOLOPLUS2 tools.
The most widely used hurting assessment tool within attention places in Glasgow is the ABBEY hurting graduated table ( ref ) . Interestingly, the British Pain Society and British Geriatric Society ( BPS/BGS ) ( 2007 ) have besides reviewed all of these appraisal tools and suggest that at present, none of them show sufficient psychometric qualities for them to be recommended for usage. On the other manus they every bit recognise the demand for experimental appraisal of demand in those who can non pass on and therefore recommend the ABBEY graduated table. In add-on to this the BPS/BGS ( 2007 ) have produced an algorithm for measuring hurting which offers 2 different tracts, one for those who can pass on and one for those who can non ( see appendix aˆ¦ ) .
Taking into consideration all of the information available, in order to accurately mensurate good hurting control in relation to its overall consequence on QoL in the attention place population in Glasgow, the ABBEY hurting graduated table is the most suited because it is already widely used and recognised, and besides because dubiously, the ground it rates as a less utile tool is merely because it has n’t been tested on a big figure of people. It is recognised as holding good cogency, but lacks test-retest dependability ( Herr et al 2010 ; BPS/BGS 2007 ; Zwakhalen et Al 2006 ) .
Current National Policy and Models of Care for Long Term Conditions
Current national policy in Scotland concentrating on long term conditions in general have really clear key aims which are a contemplation of the reported 2 million people in Scotland who presently have at least one long term status ( The Scots Government 2009 ) . The hereafter of pull offing long term conditions may see a displacement in how attention is delivered, with a proposal to follow a Chronic Care Model to pull off them ( Wagner 1998 ) . Cardinal to this attention theoretical account is the Kaiser Permanente Pyramid ( See appendix 4 ) . Level 3 of the pyramid represents 3-5 % of the population who require intensive instance direction due to complex co-morbidity. The bulk of those populating in attention places will fall in this class.
The Scots Government certification goes farther to province that some of the chief marks that apply to the direction of long term conditions are to cut down infirmary bed yearss, cut down rate of attending at A+E and cut down 65+ exigency bed yearss. Elwin et Al ( 2008 ) carried out research which looked at instance direction by nurses in primary attention. One of the issues raised was the concern that by utilizing decrease in unplanned admittance as the most valued outcome step meant that it would be dubious that instance direction would be given future support. They suggest that the result steps should concentrate on coordinated bringing of attention and improved quality of life. These findings are at odds with the Scots Government precedences who clearly province that reduced hospital admittances in this group are a precedence, but that they besides wish to follow Wagner ‘s chronic attention theoretical account ( Scots Government 2009 ) . In recent times of asceticism, there is a possibility that the chronic attention theoretical account may merely stay a authorities precedence if it can turn out to be cost effectual.
Debatably, the CHLN service in Greater Glasgow provide elements of this chronic attention theoretical account, and do so scrutinize hospital admittance rates as an result step, peculiarly for those having alleviative and terminal of life attention. The ability to guarantee that the patient stays in their ain place at the terminal of their life has been made more possible by supplying on-going support and instruction to care place staff.
Recommendations for Practice
Care Homes Services and the Nursing Homes Medical Practice are presently back uping pattern in supplying gilded standard terminal of life attention to care place occupants having nursing attention within Greater Glasgow. However, in order to suitably mensurate whether the demands of those occupants who have pain, before making this phase, are being met, the squad require to follow a more formal attack to appraisal and audit of how hurting is measured and the subsequent intervention of this.
From reexamining the research available, the countries that the attention places team need to see in farther audit of pattern are:
Pain has a direct correlative to QoL
Pain is under-treated and under-reported in terrible dementedness
Proxy evaluation tools for mensurating hurting and QoL are under-utilised despite being recognised as utile in patient appraisal
Pain is frequently mis-diagnosed as behavioral jobs associated with advanced dementedness and hence wrongly treated
As mentioned antecedently, the usage of buprenorphine spot medicine has increased by 130 % within the NHMP patients ( Downes 2011 ) , and at present this intervention is non recommended for usage by the Scots Medicines Consortium ( SMC 2011 ) . With this in head, farther audit will hopefully give more lucidity as to why piece medicine usage has increased in this group, and of class why the usage of suspension paracetamol has besides increased.
A working party has been established to take this undertaking further, and is made up of 4 CHLNs, all of whom are independent nurse prescribers, 4 GPs and the lead druggist. Support is besides being given from clinical administration in arranging an appropriate audit tool. This multi-disciplinary attack is recognised at national degree as offering a more holistic, individual centred attack to the bringing of attention ( REF )
Decision
Measuring QoL in advanced dementedness is of import in assisting to inform pattern. The grounds available suggests a nexus between hurting and its affect on other facets of QoL including behavioral perturbation, hapless slumber form, depressive unwellness and ability to prosecute in activities of day-to-day life.
Better acknowledgment and appropriate intervention of hurting is a necessity hence in bettering overall QoL for this patient group. The research and grounds already available in this country should assist to steer future pattern, and later let for improved attention for those being looked after in the attention place scene.
Furthermore, the rules of individual centred attention which are embedded in current national policy for long term conditions, are cardinal to the betterment of future pattern, and hence should be taken frontward by the multidisciplinary squad to let for a holistic attack to patient attention.