DOI: 10.1111/ajag.12062
Innovations in Aged Care Development and evaluation of the REACH (Recognise End of life And Care Holistically) out in Dementia toolkit Jan M Potter and Ramesh Fernando Department of Aged Care, Rehabilitation and Palliative Care, Illawarra and Shoalhaven Local Health District, Wollongong Hospital, Wollongong, New South Wales, Australia
Nancy Humpel Illawarra Health and Medical Research Institute, University of Wollongong, Wollongong, New South Wales, Australia
Aim: To identify evidence based signs and symptoms indicative of end stage dementia, and develop the REACH toolkit as an aid for staff to consider a palliative approach. Method: A systematic literature review was conducted of policy, position documents, guidelines and publications from 1988 to 2011. Inclusion criteria were any report or article identifying the signs and symptoms of end stage dementia which were associated with increased mortality and morbidity. Results: Eight signs and symptoms associated with worsening function and increased mortality were identified. These were incorporated into a toolkit. Experienced clinicians reviewed the toolkit. It was then trialled in six aged care facilities (ACFs) and as a result of the trial 182 residents with dementia were identified as being at the end stage. Conclusions: Use of the toolkit improved the recognition of end stage dementia among staff in ACFs. Key words: ACFs, end stage dementia, palliative care, review.
Introduction Robust evidence supports a palliative approach in end stage dementia with less burdensome interventions and improved quality of life. Studies show a palliative approach improves quality of life and reduces mortality [1]. A palliative approach means when individuals with end stage dementia reach a stage where his or her condition is not amenable to a significant improvement, effective symptom management is considered, the primary goal being improved comfort and addressing psychological, social and spiritual needs [2]. Local and international evidence shows this approach is often not taken for multiple reasons including lack of recognition that a patient’s condition is approaching end stage, lack of staff confidence to initiate and discuss a change in the focus of care and system barriers to providing palliation [3,4]. Correspondence to: Dr Jan M. Potter, Outpatient Clinic, Level 1, Lawson House, Wollongong Hospital. Email: [email protected] This project was funded by the Department of Health & Ageing, Australia. Australasian Journal on Ageing, Vol 32 No 4 December 2013, 241–246 © 2013 ACOTA
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Consistently, medical and nursing home staff fail to recognise both poor prognosis in end stage dementia and the clinical features which are associated with it [5–7]. In one international study, at the time of admission to a high level care facility, only 1.1% of residents were recognised by staff to have a life expectancy of less than 6 months; however, 71% died within that period [5]. This has been confirmed in other studies [7,8]. Therefore, it is often not perceived that a palliative approach is the best care for these residents and burdensome interventions are common. One study in the US found that 25% of the residents had tube feeding, 49% had laboratory tests, 11% were restrained and 10% were given intravenous therapy [5,9]. Compared to metastatic cancer, patients with end stage dementia were more likely to receive new feeding tubes in an acute care hospital [10]. Ideally, if a palliative approach is undertaken, residents would avoid burdensome interventions which prolong life without adding quality, and the focus should be on comfort measures. Studies using validated tools to measure distress and agitation in dementia patients have identified that high levels of distress are common in end stage dementia patients and higher suffering levels are associated with shorter survival periods [11]. Worldwide, it is estimated that 35.6 million people had dementia in 2010, increasing to 65.7 million by 2030 [12]. In Australia, as a consequence of demographic ageing, the number of individuals with dementia will increase from 230 000 in 2008 to 465 000 in 2030. December 2012 data from Australian Bureau of Statistics shows that in 2009, 62% of people with dementia lived in a health-care establishment/ institution, the majority of which were aged care facilities (ACFs) [13]. Different health-care systems in different countries have their own challenges in dealing with these projections. However, in our local area, there are significant challenges in achieving a workforce of expert clinicians in aged care and palliative care. Our local area, the Illawarra Shoalhaven Local Health District, New South Wales, Australia covers a huge geographical area (200 km coast) with shortages of specialist geriatricians, palliative care physicians and general practitioners. Local studies have also shown frequent presentations of residents from ACFs (aged care facilities) with end stage dementia to our emergency department and a very low prevalence of advance care plans (ACP) [14]. Thus, there was a clear need to support care providers in ACFs and to develop best practice sustainable models of care. A nearby metropolitan study demonstrated that education 241
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about dementia and advance care planning in ACFs increased the likelihood of residents’ receiving appropriate care in the facility, rather than transfer to an acute care hospital, with improved quality of life and reduced mortality [15]. Challenges of delivering effective palliative care in dementia include difficulties in recognising when patients are at an end stage [3,16], staff not recognising dementia as a terminal illness [4,17], lack of staff comfort in discussing end of life treatment [3,16] and system related processes preventing palliative plans being enacted [4]. This article reports the development and initial evaluation of the Recognise End of life And Care Holistically (REACH) toolkit, which is part of the REACH out in Dementia research project, a cluster randomised controlled trial (RCT) currently underway in New South Wales, Australia. This paper describes the design and evaluation of the toolkit only. The REACH toolkit was developed to improve staff recognition of the clinical features associated with end stage of dementia. The aims for the development of the toolkit were: 1 To identify evidence based signs and symptoms of end stage dementia. 2 To review the toolkit’s acceptability and usefulness in ACFs.
Methods This project was approved by the Human Research Ethics Committee of the University of Wollongong, NSW, Australia. The literature review inclusion criteria were any report (for example, proceeding of society, thesis) or peer reviewed published articles identifying a correlation of signs and symptoms with prognosis in end stage dementia from 1988 to 2011. Systematic searches were conducted of electronic databases including Medline, Pub Med, Scopus and Embase. The search also included existing policy and position documents as well as standards and guidelines from a number of sources including Australian state (New South Wales) and Commonwealth Health Departments and professional societies (such as the Australian and New Zealand Society of Geriatric Medicine). Both electronic and hand searching strategies were used to identify appropriate articles and reports. The search terms were ‘advanced dementia’ or ‘end stage dementia’ or ‘severe dementia’ and ‘symptoms’ or ‘palliative’. Further articles were scanned through cross references from the manually selected articles. The search was not restricted by study design or quality. Identified abstracts/articles were read by two authors and selected if appropriate. If there was any dispute the third author decided. The articles selected as ‘appropriate’ were any articles which included dementia and looked at correlation between increased mortality, total dependency and signs and 242
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symptoms of end stage dementia. All the selected articles were read by the two authors. From the selected articles, eight key features were identified which were associated with increased mortality in dementia and were incorporated into a short document highlighting the identified features. A focus group of experienced clinicians in geriatrics, palliative-care, specialist nursing and psychology considered the document for ease of understanding, design and all advice was incorporated. The final draft was then trialled in six ACFs. We compared the number of residents who were identified as having end stage dementia by care staff or who had advance care plans, before the use of the toolkit and two weeks after the introduction of the toolkit. Data collected included interviews with staff about their recognition of end stage dementia and number of ACPs completed. The primary outcome of interest was whether the toolkit helped staff to identify the signs and symptoms indicative of end stage dementia. Availability of ACP was considered an objective measure of recognition of end stage dementia. ACP were used infrequently so we also assessed how many residents the staff identified as now having end stage dementia according to the toolkit, whether or not they went on to undertake ACP. This was to allow us to evaluate the toolkit as a resource for the RCT. The staff were introduced to the toolkit by the research team and asked to review it over the next fortnight, then interviewed again by the team to receive feedback on its ease of use and how many residents they felt fulfilled the criteria.
Results The search revealed an initial 242 articles of which a final 45 documents were accepted for inclusion by all authors. This comprised of 20 research papers, 12 reports and reviews, 11 discussion papers and two position statements. From the review, eight main symptoms and signs of end stage dementia were identified. Evidence and observations for inclusion of the symptoms and signs Following the literature review, the evidence below was gathered to support the inclusion of each sign and symptom; 1 Requires help for daily tasks for survival, self-care, continence When a person reaches the end stage of dementia, their capacity for self-care progressively diminishes, making them totally dependent on carers to survive [18–23]. They become incontinent of urine and faeces [18–20,24]. Functional impairment with impairment of activities of daily living (ADLs) has been a strong predictor of survival [25]. 2 Communication difficulties In end stage dementia, there is progressive worsening of speech, ability to communicate deteriorates; person Australasian Journal on Ageing, Vol 32 No 4 December 2013, 241–246 © 2013 ACOTA
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eventually becomes incoherent, vocabulary becomes limited to few words or phrase; then a single word, mute, unresponsive [18–20,25–30]. There is severe impairment of expressive and receptive communication [18,22,23,31]. 3 Eating or feeding difficulties Difficulties with eating and swallowing are a normal part of the disease process in Alzheimer’s Dementia and are included as a key indicator that the person is moving towards the end of their life [19]. Eating problems could be as high as 90.4% in the last 3 months of life in nursing home residents with end stage dementia [8], and 95.8% in a geriatric hospital setting [32]. Individuals in this stage may simply forget how to eat, or have impairment of the swallowing mechanisms [27,28,33] with dysphagia being a common feature affecting up to 70% of individuals [5,18,23,34–36] and the risk of aspiration increases [20]. Appetite is highly correlated with survival time [25]. 4 Deterioration in mobility and posture In end stage dementia, a person’s ability to independently mobilise progressively diminishes, they experience problems in maintaining sitting posture and subsequently loss of head and neck control [18] and eventually become bed bound [19,20,22–25,27,29–31,37,38]. Impairment in mobility has been found to be significantly related to 6 months survival time [25]. 5 Development of contractures Development of contractures because of muscle rigidity and deconditioning with muscle atrophy is found in end stage dementia [18,19,22]. 6 Persistent confusion, agitation, withdrawal, lethargy, apathy Neuropsychiatric symptoms among residents with end stage dementia are very common with reports as high as 85.4% of residents in ACFs [39]. Behavioural problems have been found among 83% of dementia patients in the last year of life [34]. Other prevalent conditions associated with end stage dementia include agitation and aggression (50.4%) [39,40], depression (45.5%),and withdrawal/lethargy (43.1%) [39]. Some typically become mute and apathetic [28]. The development of these features is distressing to the patient and carers but can be a useful indicator of progression of disease which can herald a different approach to management. 7 Recurrent infections Pneumonia and other infections such as urinary tract are a very common and their complications are a cause of death in patients with end stage dementia [20]. Intercurrent infections are a complication as well as an inevitable consequence of end stage dementia [19,25,27]. Some of the causes for recurrent infections are inability to report symptoms, reduced immune response, inability to ambulate and swallowing difficulties [9,18]. Australasian Journal on Ageing, Vol 32 No 4 December 2013, 241–246 © 2013 ACOTA
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Compared to terminal cancer, among nursing home residents with end stage dementia, pneumonia (10.8% vs. 3.6%) and fever (13.4% vs. 6.8%) were significantly more common [5]. Six-month mortality for individuals hospitalised with end stage dementia and pneumonia can be as high as 53% [41]. A further study on pneumonia found that the 6 weeks mortality rate was 18.7% in non-hospitalised individuals compared to 39.5% in hospitalised individuals [42]. A longitudinal study reported that according to the autopsy reports the principal immediate cause of death in end stage dementia was pneumonia in 57% [43]. Another prospective cohort study reported the 6-month mortality rate for nursing home residents who had pneumonia was 46.7% and a febrile episode was 44.5%, respectively. These rates were considerably higher than the mortality rates of residents in whom such complications had not developed at the time [8]. 8 Inability to recognise familiar things In end stage dementia, the ability to recognise self, friends, family is significantly diminished [18,23,28,31,44] and these residents will eventually be unable to recognise even everyday objects [31,37]. End stage dementia with a Functional Assessment Staging Tool stage 7C or greater (unable to walk without assistance and cannot have a meaningful conversation) with associated medical complications (swallowing problems, aspiration pneumonia, malnutrition, dehydration, decubitus ulcers, urinary tract infections, septicaemia, seizures, fractures or broken bones, and deep vein thrombosis) and dependency on activities of daily living (ADLs) has less than 6 month survival [25,38]. These features have been used as criteria to identify patients who are eligible for hospice enrolment with end stage dementia [25]. We hypothesised that recurrent admissions to hospital with any of the eight symptoms and signs could be an indication that the patient is in end stage dementia. However, we found little information reported or commented on in the papers reviewed. This evidence and observations were incorporated into a document called the REACH toolkit (Table 1). Presence of one or more symptoms or signs were taken as a trigger to initiate advance care planning and staff education was tailored to enhance recognition of this phase. Although the literature does not specifically mention a set or a number of signs and symptoms that would definitively indicate end stage dementia, any of the above can be confidently taken as triggers to indicate that phase is approaching. In addition to the eight signs and symptoms which indicate end stage of dementia, the toolkit contains a local contact page for each facility to allow them to access general practice, specialist geriatrician and palliative care specialist for advice. 243
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Table 1: The eight toolkit signs and symptoms 1 2 3 4 5 6 7 8
Dependant for all activities of daily living; requiring assistance of caregivers to survive; urine and faecal incontinence. Severe impairment of expressive and receptive communication often limited to single words or nonsense phrases. Eating or feeding difficulties: loss of ability to recognise food, self-feed, swallow effectively; refusal to eat and drink with weight loss; persistent inability to eat when fed. Loss of ability to walk followed up by inability to stand, problems in maintaining sitting posture and subsequently loss of head a neck control, eventually bed bound. Development of contractures because of muscle rigidity and deconditioning. Persistent confusion, agitation, withdrawal, lethargy, apathy. Recurrent infections. Having no recognition of family/friends/everyday objects. All these symptoms do not need to be present. One or more can be enough to trigger the need to change to a palliative approach. These symptoms are often present in residents with dementia who have recurrent admissions to hospital within last 6–12 months, recurrent requests to see the general practitioner or recurrent interventions.
A communication sheet which can be used as a referral document between the various clinicians, and an advice sheet which outlines suggested treatments for the various symptoms the individual might develop through the progression of their illness is also a part of toolkit document (Appendix I). Trial of the toolkit There were no advance care plans in place at the six study ACFs. A total of 145 residents from low level care (LLC), 262 from high care (HLC) and 126 from mixed care did not have ACP in place. Following the initial introduction of the toolkit (for 2 weeks), staff identified 182 residents (14 in LLC, 139 in HLC and 29 in Mixed Care) as meeting some or all of the criteria of the toolkit. Most residents that staff felt appropriate for evaluation using the toolkit met at least four of the criteria.
Discussion To date, end stage dementia in ACFs is poorly recognised and thus a palliative approach is not undertaken. This results in poor quality of life with increased burdensome interventions [8]. A palliative approach has been shown to improve mortality, morbidity and quality of life. Our review of the literature, policy and position documents, standards and guidelines found an existing body of evidence on the signs and symptoms of end stage dementia, providing evidence for the appropriateness of moving to a palliative approach within ACFs. While evidence to predict prognosis for all eight signs and symptoms was not yet available, dependence on ADLs, urinary and bowel incontinence, significant communication difficulties (inability to make themselves understood by others), extensive/total dependence on mobility would suggest that death was likely within 6 months, that is, the person is in end stage dementia [45]. Local evidence [14] has identified poor uptake and practice around the use of ACP in Northern Illawarra, Australia and a 244
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lack of processes to support them being adhered to if they are in place. Furthermore, work within our local ACFs found that staff have a poor level of understanding of the terminal nature of dementia and how to recognise end stage dementia in frail old residents. This local context identified the need to develop new simple and practical methods to support ACF staff (many of whom may have a low level of education and skills) to identify residents with dementia for whom their care approach should be one of palliation rather than active life prolonging management. This study identified eight key clinical features associated with end stage dementia through a review of the literature and used these clinical features to develop a simple toolkit for staff in an ACF setting. Staff also identified that they found current position statements and guidelines too lengthy and they did not feel empowered to suggest a change in care of the resident without senior medical review. The toolkit provided easily recognised clinical symptoms and signs to prompt staff of all training levels to recognise that their resident may be at an end stage of dementia and provided a process for contacting and communicating with senior medical and nursing staff to facilitate a change in direction of care. The toolkit is intended as a means of empowering ACF staff to initiate evidence-based care in their facility when they previously felt unable to do so.
Conclusion This toolkit has shown promise in improving identification of end stage dementia among aged care facility residents, and as a useful resource for staff in ACFs. The impact of this toolkit on burdensome interventions is currently being evaluated in a cluster RCT.
Acknowledgements This project was funded by the Department of Health & Ageing, Australia. The funding body had no role in the design, methods or preparation of this manuscript. Illawarra Health & Medical Research Institute, University of Wollongong, New South Wales, Australia
Key Points • An evidence base currently exists for the signs and symptoms of end stage dementia. • End stage dementia is still poorly recognised in aged care facilities. • Eight key clinical features were identified which can assist staff to identify end stage dementia. • Use of the Recognise End of life And Care Holistically (REACH) toolkit improved recognition of end stage dementia among staff in residential aged care facilities.
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Appendix I Summary of REACH out in Dementia toolkit resource pack This contains:
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General practitioner care advice summary: • Symptoms and signs identified from the toolkit. • Resident’s wishes. • Family’s wishes. • Consider referral to – aged care or palliative care. • Summary of care staff concerns and their opinion.
Introduction to end stage dementia. Identified eight signs and symptoms of end stage dementia with their definitions.
Guideline for symptom control in end stage dementia: • Pain, dyspnoea, confusion/delirium, agitation, nausea and vomiting, respiratory secretions and seizures.
Local contact page: • Contact numbers for aged care facility staff. • Contact numbers for a geriatrician, palliative care physician, advance trainee in geriatrics and an aged care clinical nurse consultant during working hours and after hours.
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Innovations in Aged Care Development and evaluation of the REACH (Recognise End of life And Care Holistically) out in Dementia toolkit Jan M Potter and Ramesh Fernando Department of Aged Care, Rehabilitation and Palliative Care, Illawarra and Shoalhaven Local Health District, Wollongong Hospital, Wollongong, New South Wales, Australia
Nancy Humpel Illawarra Health and Medical Research Institute, University of Wollongong, Wollongong, New South Wales, Australia
Aim: To identify evidence based signs and symptoms indicative of end stage dementia, and develop the REACH toolkit as an aid for staff to consider a palliative approach. Method: A systematic literature review was conducted of policy, position documents, guidelines and publications from 1988 to 2011. Inclusion criteria were any report or article identifying the signs and symptoms of end stage dementia which were associated with increased mortality and morbidity. Results: Eight signs and symptoms associated with worsening function and increased mortality were identified. These were incorporated into a toolkit. Experienced clinicians reviewed the toolkit. It was then trialled in six aged care facilities (ACFs) and as a result of the trial 182 residents with dementia were identified as being at the end stage. Conclusions: Use of the toolkit improved the recognition of end stage dementia among staff in ACFs. Key words: ACFs, end stage dementia, palliative care, review.
Introduction Robust evidence supports a palliative approach in end stage dementia with less burdensome interventions and improved quality of life. Studies show a palliative approach improves quality of life and reduces mortality [1]. A palliative approach means when individuals with end stage dementia reach a stage where his or her condition is not amenable to a significant improvement, effective symptom management is considered, the primary goal being improved comfort and addressing psychological, social and spiritual needs [2]. Local and international evidence shows this approach is often not taken for multiple reasons including lack of recognition that a patient’s condition is approaching end stage, lack of staff confidence to initiate and discuss a change in the focus of care and system barriers to providing palliation [3,4]. Correspondence to: Dr Jan M. Potter, Outpatient Clinic, Level 1, Lawson House, Wollongong Hospital. Email: [email protected] This project was funded by the Department of Health & Ageing, Australia. Australasian Journal on Ageing, Vol 32 No 4 December 2013, 241–246 © 2013 ACOTA
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Consistently, medical and nursing home staff fail to recognise both poor prognosis in end stage dementia and the clinical features which are associated with it [5–7]. In one international study, at the time of admission to a high level care facility, only 1.1% of residents were recognised by staff to have a life expectancy of less than 6 months; however, 71% died within that period [5]. This has been confirmed in other studies [7,8]. Therefore, it is often not perceived that a palliative approach is the best care for these residents and burdensome interventions are common. One study in the US found that 25% of the residents had tube feeding, 49% had laboratory tests, 11% were restrained and 10% were given intravenous therapy [5,9]. Compared to metastatic cancer, patients with end stage dementia were more likely to receive new feeding tubes in an acute care hospital [10]. Ideally, if a palliative approach is undertaken, residents would avoid burdensome interventions which prolong life without adding quality, and the focus should be on comfort measures. Studies using validated tools to measure distress and agitation in dementia patients have identified that high levels of distress are common in end stage dementia patients and higher suffering levels are associated with shorter survival periods [11]. Worldwide, it is estimated that 35.6 million people had dementia in 2010, increasing to 65.7 million by 2030 [12]. In Australia, as a consequence of demographic ageing, the number of individuals with dementia will increase from 230 000 in 2008 to 465 000 in 2030. December 2012 data from Australian Bureau of Statistics shows that in 2009, 62% of people with dementia lived in a health-care establishment/ institution, the majority of which were aged care facilities (ACFs) [13]. Different health-care systems in different countries have their own challenges in dealing with these projections. However, in our local area, there are significant challenges in achieving a workforce of expert clinicians in aged care and palliative care. Our local area, the Illawarra Shoalhaven Local Health District, New South Wales, Australia covers a huge geographical area (200 km coast) with shortages of specialist geriatricians, palliative care physicians and general practitioners. Local studies have also shown frequent presentations of residents from ACFs (aged care facilities) with end stage dementia to our emergency department and a very low prevalence of advance care plans (ACP) [14]. Thus, there was a clear need to support care providers in ACFs and to develop best practice sustainable models of care. A nearby metropolitan study demonstrated that education 241
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about dementia and advance care planning in ACFs increased the likelihood of residents’ receiving appropriate care in the facility, rather than transfer to an acute care hospital, with improved quality of life and reduced mortality [15]. Challenges of delivering effective palliative care in dementia include difficulties in recognising when patients are at an end stage [3,16], staff not recognising dementia as a terminal illness [4,17], lack of staff comfort in discussing end of life treatment [3,16] and system related processes preventing palliative plans being enacted [4]. This article reports the development and initial evaluation of the Recognise End of life And Care Holistically (REACH) toolkit, which is part of the REACH out in Dementia research project, a cluster randomised controlled trial (RCT) currently underway in New South Wales, Australia. This paper describes the design and evaluation of the toolkit only. The REACH toolkit was developed to improve staff recognition of the clinical features associated with end stage of dementia. The aims for the development of the toolkit were: 1 To identify evidence based signs and symptoms of end stage dementia. 2 To review the toolkit’s acceptability and usefulness in ACFs.
Methods This project was approved by the Human Research Ethics Committee of the University of Wollongong, NSW, Australia. The literature review inclusion criteria were any report (for example, proceeding of society, thesis) or peer reviewed published articles identifying a correlation of signs and symptoms with prognosis in end stage dementia from 1988 to 2011. Systematic searches were conducted of electronic databases including Medline, Pub Med, Scopus and Embase. The search also included existing policy and position documents as well as standards and guidelines from a number of sources including Australian state (New South Wales) and Commonwealth Health Departments and professional societies (such as the Australian and New Zealand Society of Geriatric Medicine). Both electronic and hand searching strategies were used to identify appropriate articles and reports. The search terms were ‘advanced dementia’ or ‘end stage dementia’ or ‘severe dementia’ and ‘symptoms’ or ‘palliative’. Further articles were scanned through cross references from the manually selected articles. The search was not restricted by study design or quality. Identified abstracts/articles were read by two authors and selected if appropriate. If there was any dispute the third author decided. The articles selected as ‘appropriate’ were any articles which included dementia and looked at correlation between increased mortality, total dependency and signs and 242
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symptoms of end stage dementia. All the selected articles were read by the two authors. From the selected articles, eight key features were identified which were associated with increased mortality in dementia and were incorporated into a short document highlighting the identified features. A focus group of experienced clinicians in geriatrics, palliative-care, specialist nursing and psychology considered the document for ease of understanding, design and all advice was incorporated. The final draft was then trialled in six ACFs. We compared the number of residents who were identified as having end stage dementia by care staff or who had advance care plans, before the use of the toolkit and two weeks after the introduction of the toolkit. Data collected included interviews with staff about their recognition of end stage dementia and number of ACPs completed. The primary outcome of interest was whether the toolkit helped staff to identify the signs and symptoms indicative of end stage dementia. Availability of ACP was considered an objective measure of recognition of end stage dementia. ACP were used infrequently so we also assessed how many residents the staff identified as now having end stage dementia according to the toolkit, whether or not they went on to undertake ACP. This was to allow us to evaluate the toolkit as a resource for the RCT. The staff were introduced to the toolkit by the research team and asked to review it over the next fortnight, then interviewed again by the team to receive feedback on its ease of use and how many residents they felt fulfilled the criteria.
Results The search revealed an initial 242 articles of which a final 45 documents were accepted for inclusion by all authors. This comprised of 20 research papers, 12 reports and reviews, 11 discussion papers and two position statements. From the review, eight main symptoms and signs of end stage dementia were identified. Evidence and observations for inclusion of the symptoms and signs Following the literature review, the evidence below was gathered to support the inclusion of each sign and symptom; 1 Requires help for daily tasks for survival, self-care, continence When a person reaches the end stage of dementia, their capacity for self-care progressively diminishes, making them totally dependent on carers to survive [18–23]. They become incontinent of urine and faeces [18–20,24]. Functional impairment with impairment of activities of daily living (ADLs) has been a strong predictor of survival [25]. 2 Communication difficulties In end stage dementia, there is progressive worsening of speech, ability to communicate deteriorates; person Australasian Journal on Ageing, Vol 32 No 4 December 2013, 241–246 © 2013 ACOTA
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eventually becomes incoherent, vocabulary becomes limited to few words or phrase; then a single word, mute, unresponsive [18–20,25–30]. There is severe impairment of expressive and receptive communication [18,22,23,31]. 3 Eating or feeding difficulties Difficulties with eating and swallowing are a normal part of the disease process in Alzheimer’s Dementia and are included as a key indicator that the person is moving towards the end of their life [19]. Eating problems could be as high as 90.4% in the last 3 months of life in nursing home residents with end stage dementia [8], and 95.8% in a geriatric hospital setting [32]. Individuals in this stage may simply forget how to eat, or have impairment of the swallowing mechanisms [27,28,33] with dysphagia being a common feature affecting up to 70% of individuals [5,18,23,34–36] and the risk of aspiration increases [20]. Appetite is highly correlated with survival time [25]. 4 Deterioration in mobility and posture In end stage dementia, a person’s ability to independently mobilise progressively diminishes, they experience problems in maintaining sitting posture and subsequently loss of head and neck control [18] and eventually become bed bound [19,20,22–25,27,29–31,37,38]. Impairment in mobility has been found to be significantly related to 6 months survival time [25]. 5 Development of contractures Development of contractures because of muscle rigidity and deconditioning with muscle atrophy is found in end stage dementia [18,19,22]. 6 Persistent confusion, agitation, withdrawal, lethargy, apathy Neuropsychiatric symptoms among residents with end stage dementia are very common with reports as high as 85.4% of residents in ACFs [39]. Behavioural problems have been found among 83% of dementia patients in the last year of life [34]. Other prevalent conditions associated with end stage dementia include agitation and aggression (50.4%) [39,40], depression (45.5%),and withdrawal/lethargy (43.1%) [39]. Some typically become mute and apathetic [28]. The development of these features is distressing to the patient and carers but can be a useful indicator of progression of disease which can herald a different approach to management. 7 Recurrent infections Pneumonia and other infections such as urinary tract are a very common and their complications are a cause of death in patients with end stage dementia [20]. Intercurrent infections are a complication as well as an inevitable consequence of end stage dementia [19,25,27]. Some of the causes for recurrent infections are inability to report symptoms, reduced immune response, inability to ambulate and swallowing difficulties [9,18]. Australasian Journal on Ageing, Vol 32 No 4 December 2013, 241–246 © 2013 ACOTA
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Compared to terminal cancer, among nursing home residents with end stage dementia, pneumonia (10.8% vs. 3.6%) and fever (13.4% vs. 6.8%) were significantly more common [5]. Six-month mortality for individuals hospitalised with end stage dementia and pneumonia can be as high as 53% [41]. A further study on pneumonia found that the 6 weeks mortality rate was 18.7% in non-hospitalised individuals compared to 39.5% in hospitalised individuals [42]. A longitudinal study reported that according to the autopsy reports the principal immediate cause of death in end stage dementia was pneumonia in 57% [43]. Another prospective cohort study reported the 6-month mortality rate for nursing home residents who had pneumonia was 46.7% and a febrile episode was 44.5%, respectively. These rates were considerably higher than the mortality rates of residents in whom such complications had not developed at the time [8]. 8 Inability to recognise familiar things In end stage dementia, the ability to recognise self, friends, family is significantly diminished [18,23,28,31,44] and these residents will eventually be unable to recognise even everyday objects [31,37]. End stage dementia with a Functional Assessment Staging Tool stage 7C or greater (unable to walk without assistance and cannot have a meaningful conversation) with associated medical complications (swallowing problems, aspiration pneumonia, malnutrition, dehydration, decubitus ulcers, urinary tract infections, septicaemia, seizures, fractures or broken bones, and deep vein thrombosis) and dependency on activities of daily living (ADLs) has less than 6 month survival [25,38]. These features have been used as criteria to identify patients who are eligible for hospice enrolment with end stage dementia [25]. We hypothesised that recurrent admissions to hospital with any of the eight symptoms and signs could be an indication that the patient is in end stage dementia. However, we found little information reported or commented on in the papers reviewed. This evidence and observations were incorporated into a document called the REACH toolkit (Table 1). Presence of one or more symptoms or signs were taken as a trigger to initiate advance care planning and staff education was tailored to enhance recognition of this phase. Although the literature does not specifically mention a set or a number of signs and symptoms that would definitively indicate end stage dementia, any of the above can be confidently taken as triggers to indicate that phase is approaching. In addition to the eight signs and symptoms which indicate end stage of dementia, the toolkit contains a local contact page for each facility to allow them to access general practice, specialist geriatrician and palliative care specialist for advice. 243
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Table 1: The eight toolkit signs and symptoms 1 2 3 4 5 6 7 8
Dependant for all activities of daily living; requiring assistance of caregivers to survive; urine and faecal incontinence. Severe impairment of expressive and receptive communication often limited to single words or nonsense phrases. Eating or feeding difficulties: loss of ability to recognise food, self-feed, swallow effectively; refusal to eat and drink with weight loss; persistent inability to eat when fed. Loss of ability to walk followed up by inability to stand, problems in maintaining sitting posture and subsequently loss of head a neck control, eventually bed bound. Development of contractures because of muscle rigidity and deconditioning. Persistent confusion, agitation, withdrawal, lethargy, apathy. Recurrent infections. Having no recognition of family/friends/everyday objects. All these symptoms do not need to be present. One or more can be enough to trigger the need to change to a palliative approach. These symptoms are often present in residents with dementia who have recurrent admissions to hospital within last 6–12 months, recurrent requests to see the general practitioner or recurrent interventions.
A communication sheet which can be used as a referral document between the various clinicians, and an advice sheet which outlines suggested treatments for the various symptoms the individual might develop through the progression of their illness is also a part of toolkit document (Appendix I). Trial of the toolkit There were no advance care plans in place at the six study ACFs. A total of 145 residents from low level care (LLC), 262 from high care (HLC) and 126 from mixed care did not have ACP in place. Following the initial introduction of the toolkit (for 2 weeks), staff identified 182 residents (14 in LLC, 139 in HLC and 29 in Mixed Care) as meeting some or all of the criteria of the toolkit. Most residents that staff felt appropriate for evaluation using the toolkit met at least four of the criteria.
Discussion To date, end stage dementia in ACFs is poorly recognised and thus a palliative approach is not undertaken. This results in poor quality of life with increased burdensome interventions [8]. A palliative approach has been shown to improve mortality, morbidity and quality of life. Our review of the literature, policy and position documents, standards and guidelines found an existing body of evidence on the signs and symptoms of end stage dementia, providing evidence for the appropriateness of moving to a palliative approach within ACFs. While evidence to predict prognosis for all eight signs and symptoms was not yet available, dependence on ADLs, urinary and bowel incontinence, significant communication difficulties (inability to make themselves understood by others), extensive/total dependence on mobility would suggest that death was likely within 6 months, that is, the person is in end stage dementia [45]. Local evidence [14] has identified poor uptake and practice around the use of ACP in Northern Illawarra, Australia and a 244
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lack of processes to support them being adhered to if they are in place. Furthermore, work within our local ACFs found that staff have a poor level of understanding of the terminal nature of dementia and how to recognise end stage dementia in frail old residents. This local context identified the need to develop new simple and practical methods to support ACF staff (many of whom may have a low level of education and skills) to identify residents with dementia for whom their care approach should be one of palliation rather than active life prolonging management. This study identified eight key clinical features associated with end stage dementia through a review of the literature and used these clinical features to develop a simple toolkit for staff in an ACF setting. Staff also identified that they found current position statements and guidelines too lengthy and they did not feel empowered to suggest a change in care of the resident without senior medical review. The toolkit provided easily recognised clinical symptoms and signs to prompt staff of all training levels to recognise that their resident may be at an end stage of dementia and provided a process for contacting and communicating with senior medical and nursing staff to facilitate a change in direction of care. The toolkit is intended as a means of empowering ACF staff to initiate evidence-based care in their facility when they previously felt unable to do so.
Conclusion This toolkit has shown promise in improving identification of end stage dementia among aged care facility residents, and as a useful resource for staff in ACFs. The impact of this toolkit on burdensome interventions is currently being evaluated in a cluster RCT.
Acknowledgements This project was funded by the Department of Health & Ageing, Australia. The funding body had no role in the design, methods or preparation of this manuscript. Illawarra Health & Medical Research Institute, University of Wollongong, New South Wales, Australia
Key Points • An evidence base currently exists for the signs and symptoms of end stage dementia. • End stage dementia is still poorly recognised in aged care facilities. • Eight key clinical features were identified which can assist staff to identify end stage dementia. • Use of the Recognise End of life And Care Holistically (REACH) toolkit improved recognition of end stage dementia among staff in residential aged care facilities.
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Appendix I Summary of REACH out in Dementia toolkit resource pack This contains:
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General practitioner care advice summary: • Symptoms and signs identified from the toolkit. • Resident’s wishes. • Family’s wishes. • Consider referral to – aged care or palliative care. • Summary of care staff concerns and their opinion.
Introduction to end stage dementia. Identified eight signs and symptoms of end stage dementia with their definitions.
Guideline for symptom control in end stage dementia: • Pain, dyspnoea, confusion/delirium, agitation, nausea and vomiting, respiratory secretions and seizures.
Local contact page: • Contact numbers for aged care facility staff. • Contact numbers for a geriatrician, palliative care physician, advance trainee in geriatrics and an aged care clinical nurse consultant during working hours and after hours.
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