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Dementia: Assessment, management and support for people living with dementia and their carers. London: National Institute for Health and Care Excellence (NICE); 2018 Jun. (NICE Guideline, No. 97.)
Dementia: Assessment, management and support for people living with dementia and their carers.
Show detailsDementia is primarily a condition of old age and as such many people with dementia will have additional long term illnesses also associated with increasing age.
People with dementia often have several additional long term conditions; a UK based study found that, on average, people with dementia had 4.6 chronic illnesses in addition to their dementia (Guthrie 2012) and other geriatric conditions such as delirium, falls and incontinence are also more frequent.
The most common chronic illnesses in people with dementia include diabetes, hypertension, cardiovascular disease and age-related musculoskeletal disorders.
The increasing multi-morbidity associated with older age leads to a higher level of clinical complexity which health care professionals may find challenging especially within health care systems where clinical guidelines and service organisation are often focused on a single illness. In addition, research to date has often considered dementia in isolation with little, if any, regard as to how other complex health needs might impact on the person living with dementia and their family’s needs and experiences and service use and provision. Also certain comorbid medical conditions may exacerbate the progression of dementia; for example, there is evidence that cognitive decline may be accelerated in older people with type 2 diabetes. The presence of dementia may also adversely affect the clinical care of other conditions by limiting their ability to self-care, take medication, attend specialist care appointments and engage in health promotion. There has been little research investigating the effect of co-existent multi-morbidity on a person living with dementia’s health, well-being and clinical care and what ‘good practice’ would look like to both service users and providers.
Healthcare professionals who do not work in mental health often have little understanding of the needs and experiences of people with dementia and consequently their care needs are frequently not met with evidence of service duplication, delays in the identification of problems and unnecessary interventions. Whilst improving quality of care for people with dementia remains a key government target, there is a growing concern that current health care service organisation is not meeting the needs of an increasing ageing population. Key questions to be addressed include the optimal ways to manage both co-existing long term illnesses after a diagnosis of dementia, and how best to manage intercurrent illness in people living with dementia.
18.1. Assessing and treating intercurrent illness in people living with dementia
Review questions
- Are there effective methods for assessing intercurrent illness in people living with dementia that are different from those already in use for people who do not have dementia?
- Are there effective methods for treating intercurrent illness in people living with dementia that are different from those already in use for people who do not have dementia?
18.1.1. Introduction
The aim of these review questions was to identify the most effective methods for assessing the symptoms and severity of intercurrent illness and to identify the most effective interventions and strategies for treating intercurrent illness in people living with dementia.
Both review questions considered whether the methods used for assessing and treating intercurrent illness in people living with dementia are different from those used for people who do not have dementia. They sought to explore the methods of assessing and treating an unrelated acute condition presenting in people living with dementia and specifically focused on people showing symptoms of the following.
- Pain
- Falls (& loss of mobility)
- Delirium
- Urinary tract infections
The review identified studies that fulfilled the conditions specified in Table 97 or Table 98. For full details of the review protocols, see Appendix C.
Table 97
Review summary: assessing intercurrent illness in people living with dementia.
Table 98
Review summary: managing intercurrent illness in people living with dementia.
18.1.2. Evidence review
A systematic search identified 8,833 references. The references were screened on their titles and abstracts and 285 references were ordered for full text across both review questions. 258 papers were subsequently excluded because they did not fit the inclusion criteria (see Appendix F for a detailed list of excluded studies and reasons for their exclusion).
Seven studies were included in the evidence review for the question considering assessments for an intercurrent illness. Five studies were included for assessing pain, 1 study for assessing falls and 1 study for assessing delirium. No studies were identified as relevant to consider assessments for urinary tract infections in people living with dementia compared with those who do not have dementia.
Fourteen studies were included in the evidence review for the question considering management of an intercurrent illness. Eight studies were included for falls, 3 for pain, 2 for hip fractures and 1 for delirium.
A summary of the characteristics of the included studies for assessment is provided in Table 99 and for management in Table 100. For the full evidence tables and full GRADE profiles please see Appendix E and Appendix G. References for the included studies are given in appendix I.
18.1.3. Health economic evidence
A single search was undertaken for review questions 20 and 21. A total of 2,565 citations was returned. Following review of titles and abstracts, the full text of 1 study was retrieved for detailed consideration, but it did not meet inclusion criteria. Therefore, no relevant cost–utility analyses were identified for these questions.
18.1.4. Evidence statements
18.1.4.1. Assessment
18.1.4.1.1. Pain assessment
Low- to moderate-quality evidence from 1 observational study with 600 participants found that rates of those assessed as having pain increased significantly for people with cognitive impairment when pain was assessed by an observational rating scale (PAINAD) compared with those who did not have cognitive impairment. When pain was assessed by a self-report scale (NRS), there were no significant differences between people with cognitive impairment and those who did not have cognitive impairment.
Low-quality evidence from 1 observational study with 40 participants found that pain intensity ratings from an observational rating scale (NOPPAIN) did not correlate with pain intensity ratings from self-report scales (VDS and NRS), for people with cognitive impairment; however, for people who did not have cognitive impairment, there was a significant positive correlation between pain intensity ratings from the observational rating and self-report scales.
The same study found there was a significant positive correlation between pain intensity ratings from an observational rating scale (NOPPAIN) and total number of pain indicators observed for both people with cognitive impairment and those who did not have cognitive impairment.
Very low-quality evidence from 1 observational study with 25 participants found a significant positive correlation between pain ratings on an observational rating scale (PAINAD) and self-report scale (NRS) for both people with cognitive impairment and those who did not have cognitive impairment.
Very low-quality evidence from 1 observational study with 174 participants found ratings from two observation scales (REPOS versus PAINAD) were significantly positively correlated but when self-report observations were obtained by a nurse, pain ratings were not positively correlated with an observational rating scale (REPOS) for people with cognitive impairment. Significant positive correlations were found for both the observational rating scale and nurse led self-report rating scale for people who did not have cognitive impairment. The same study also found that pain scores recorded on the observational rating scales were significantly higher for people with cognitive impairment compared with those who did not have cognitive impairment.
Moderate-quality evidence from 1 observational study with 108 participants found higher levels of agreement between the presence of self-reported pain and the presence of observer-rated pain in people without cognitive impairment compared with people with cognitive impairment.
Moderate-quality evidence from 1 observational study with 108 participants found significant positive correlations between observational rating scales (PAINAD, NOPPAIN and Abbey pain scale) for people with cognitive impairment. The relationship between observational rating scales and self-report ratings was not significantly correlated for people who did not have cognitive impairment.
18.1.4.1.2. Falls assessment
Low-quality evidence from 1 observational study with 88 participants found people with cognitive impairment scored significantly lower on a balance assessment than those who did not have cognitive impairment. The same study also found there was a significant negative correlation between the number of falls recorded and scores on the balance scale for people with cognitive impairment and a significant positive correlation between the number of falls recorded and scores on the balance scale for those who did not have cognitive impairment.
18.1.4.1.3. Delirium assessment
Low-quality evidence from 1 observational study with 125 participants found the difference in scores assessed by the Delirium rating scale (DRS) compared with the ICD-10, DSM-II-R, DSMIV and DSM-5 were significantly higher for people who did not have cognitive impairment compared with those with cognitive impairment.
18.1.4.2. Management
18.1.4.2.1. Pain management
Low-quality evidence from 1 cluster-randomised RCT of 173 people followed up for 3 months showed that people monitored using the PACSLAC had a significantly higher increase in the amount of pain medications used than those assessed using an activity log.
Low-quality evidence from 1 cluster-randomised RCT of 173 people followed up for 3 months showed that nurses monitoring people using the PACSLAC reported lower levels of stress (as measured by the Nursing stress scale) than those monitoring people using an activity log.
Moderate-quality evidence from 1 cluster-randomised RCT of 327 people followed up for 8 weeks showed that people treated using a stepwise treatment protocol had significantly lower overall pain intensity scores, measured using the MOBID-2, than those receiving usual care. This included reductions in both musculoskeletal and internal organ, head and skin pain.
Moderate-quality evidence from 1 cluster-randomised RCT of 298 people followed up for 8 weeks showed that people treated using a stepwise treatment protocol had significantly fewer behavioural symptoms (as measured by the NPI-NH) than those receiving usual care. This included reductions in mood symptoms, depressive symptoms and apathy, but no significant differences in anxiety or irritability.
18.1.4.3. Delirium
Very low-quality evidence from 1 RCT of 16 people followed up for 30 days showed that people randomised to cognitively stimulating activities had significantly higher rates of improvement in activities of daily living (BI) and cognition (MMSE), but could not distinguish a difference in rates of improvement in delirium symptoms (CAM and DRS).
18.1.4.3.1. Hip fracture rehabilitation
Moderate-quality evidence from 1 cluster RCT of 199 could not distinguish the effectiveness of a neck of femur fracture rehabilitation programme on reducing the incidence of falls between people with and without dementia.
Very low- to low-quality evidence from 1 RCT of 47 people could not distinguish the odds of mortality or activities of daily living independence at 12 months between people offered enhanced or conventional inpatient care. There was very low-quality evidence from the same study of lower incidence of:
- urinary tract infections
- nutritional problems
- postoperative delirium
- recurrent falls
Very low-quality evidence from the same study could not distinguish:
- rates of pneumonia
- rates of decubital ulcers
- rates of postoperative fracture
- length of stay
- number of drugs prescribed on discharge
Very low-quality evidence from 2 RCTs of 177 people could not distinguish the odds of mortality at 12 months between people offered enhanced or conventional home and inpatient care.
Very low-quality evidence from 1 RCT of 47 people found higher activities of daily living scores for people offered enhanced rather than conventional home and inpatient care, but could not distinguish the odds of falls at 12 months.
Very low-quality evidence from the same study could not distinguish:
- Frequency of hospital admissions
- Attendance at accident and emergency
Very low-quality evidence from 1 RCT of 126 people could not distinguish the odds of delirium incidence between people offered geriatrician-led vs orthopaedic-led inpatient management.
18.1.4.3.2. Falls
Low- to moderate-quality evidence from 2 RCTs of 148 people found home-based exercise programmes reduced the proportion of people falling and the mean number of falls in a population of community-dwelling people with dementia, but could not differentiate levels of carer burden.
Moderate-quality evidence from 1 RCT of 123 people found group-based exercise programs reduced the proportion of people falling in a population of community-dwelling people with dementia, but could not differentiate the mean number of falls.
Low- to moderate-quality evidence from a systematic review of 7 RCTs found exercise programmes reduced the proportion of people falling by a similar amount to equivalent interventions in a population without dementia, but could not differentiate the proportion of people with subsequent fractures.
18.1.4.4. Health economic evidence
No health economic evidence was identified for this review question.
18.1.5. Evidence to recommendations
| Relative value of different outcomes | The committee noted that both the evidence presented and members’ own experience pointed to the under-diagnosis of pain in people living with dementia, and therefore any evidence that showed either an increase in the number of people living with dementia correctly identified as being in pain, or evidence of effective treatment protocols for this group would be highly relevant. The committee recognised the relevance of the evidence associated with pain and agreed there was appropriate evidence to support a recommendation for the use of structured observational tools alongside self-reported pain. This was supported by the evidence presented, which demonstrated a lack of correlation between self-reported and observer-reported pain in people living with dementia, compared with people without dementia, and that whwn observational tools were used, a similar proportion of people with and without dementia were found to be in pain, which was not the case when self-report alone was used. The committee also agreed that specific mention should be made of people who are unable to self-report pain, where observational tools may present the only viable method of evaluating pain. The committee noted that there were already published NICE guidelines in a number of the areas under consideration, such as falls and delirium, and these guidelines did not explicitly exclude people living with dementia from their scope. Therefore, evidence that merely confirmed what was already in those guidelines was considered but did not justify the need for specific recommendations. The committee agreed that further recommendations would only be relevant were the evidence pointed towards the need for differences in the management between people living with dementia and people without dementia. |
|---|---|
| Trade-off between benefits and harms | The committee noted that, for pain management, there was a key trade-off between the risk of overtreatment and what was believed to be the larger current problem of people being prescribed insufficient pain relief. The committee agreed there was appropriate evidence to support a recommendation for the use of structured observational tools alongside self-reported pain. This was supported by the evidence presented, which demonstrated a lack of correlation between self-reported and observer-reported pain in people living with dementia, compared with people without dementia. The committee also agreed that specific mention should be made of people who are unable to self-report pain, where observational tools may present the only viable method of evaluating pain. The committee observed that pain management was undertaken with a stepped approach which balances the need for analgesia alongside a change in a person’s behaviour or any signs of distress attributed to pain. In practice, treating pain in all people should be done with a holistic approach, which takes into consideration a need to assess and intervene. The committee noted that RCT evidence indicated the effectiveness of a stepwise protocol to manage pain, consistent with the way pain would be managed in people without dementia. The committee agreed that it was appropriate to make a recommendation to use such a protocol, noting that it was unlikely that there would be major differences in the way pain was treated in people with and without dementia, once the pain had been correctly identified. It was also noted that pain assessment and management was an iterative process, and there is a need to repeat assessments both when people show signs of pain and display behaviours indicative of being in pain, and during treatment to ensure healthcare staff are following the appropriate step of the protocol. The committee agreed that the principles of assessment and treatment of falls in people living with dementia should not necessarily differ to those applied to people without dementia, and the evidence presented was broadly supportive of this. It was agreed therefore that it would be appropriate to cross refer to the recommendations in the NICE guideline on Falls in Older People (CG161). However, it also noted that many of the trials of falls interventions in people living with dementia had specific modifications to ensure they worked appropriately in that group (e.g. involvement of carers in delivering or monitoring interventions). The committee therefore agreed that it would be appropriate to add a recommendation for healthcare professionals to consider the specific needs of people living with dementia when referring them for falls intervention programmes or to consider how interventions may need to be modified to ensure adequate participation. The committee noted that there was a specific area where the evidence on falls management in people living with dementia did not align with that of people without dementia, which was the effectiveness of multi-factorial interventions. These interventions are recommended in the falls guideline (CG61) but the evidence presented did not show a significant effect in a population of people living with dementia. The committee noted that the population in this RCT contained a significant proportion of people identified as having severe dementia and this raised concerns that the interventions may be less effective in this group, and that this may be attributable to the intensity of the interventions and the large number of tests involved, which may cause additional distress to someone living with dementia and in particular severe dementia. These negative factors would outweigh any benefits of the intervention. The committee discussed the evidence noting that it was strong enough to recommend that such interventions should not be used in people with severe dementia without consideration, on a case-by-case basis, to ensure that the benefits of the intervention were expected to be greater than the possible harms. |
| Trade-off between net health benefits and resource use | No health economic evidence was identified for inclusion when addressing these review questions. The committee noted that the recommendations made for pain and falls were unlikely to be more intensive than managing the same intercurrent illnesses for people without dementia, as the recommended approaches for treating pain and falls were similar to those for people without dementia. Therefore, it would be unlikely to add a significant additional cost to the NHS. |
| Quality of evidence | The committee acknowledged that the lack of longitudinal evidence in the studies meant that it was difficult to provide specific recommendations on the frequency of pain assessment. All the included studies involved regular monitoring using a prescribed protocol, but this may not be either practical or appropriate for all people with dementia in routine practice. It was acknowledged that there was a need to balance harms and benefits and, for this reason, the committee agreed it would not be appropriate to give specific recommendations about assessment frequency. Generally the committee agreed that reassessment would be appropriate where there was a concern that a person may continue to be in pain or to be experiencing a new episode of pain, as this would be the situation where a change of pain management could be relevant. Due to the lack of relevant evidence related to intercurrent delirium or urinary tract infection, the committee agreed that it was unable to draft recommendations in these areas. |
| Other considerations | The committee recognised that, in general, there was a lack of evidence appropriate to address these review questions. However, it noted that there were several NIHR-funded trials currently in development that might help mitigate this lack of evidence in the future. It therefore agreed that it was not necessary to address the current evidence gap by making specific recommendations for future research above that already being undertaken and/or considered. An exception to this was in the area of long term recovery from delirium superimposed on dementia, where the committee agreed it was appropriate to recommend future research, as there is currently a lack of evidence on how best to help people with dementia to recover to their baseline cognitive status after an acute episode of delirium. |
18.1.6. Recommendations
Pain
- 115.
Consider using a structured observational pain assessment tool:
- alongside self-reported pain and standard clinical assessment for people living with moderate to severe dementia
- alongside standard clinical assessment for people living with dementia who are unable to self-report pain.
- 116.
For people living with dementia who are in pain, consider using a stepwise treatment protocol that balances pain management and potential adverse events.
- 117.
Repeat pain assessments for people living with dementia:
- who seem to be in pain
- who show signs of behavioural changes that may be caused by pain
- after any pain management intervention.
Falls
- 118.
For guidance on managing the risk of falling for people living with dementia (in community and inpatient settings), see the NICE guideline on falls in older people. When using this guideline:
- take account of the additional support people living with dementia may need to participate effectively
- be aware that multifactorial falls interventions may not be suitable for a person living with severe dementia.
18.1.7. Research recommendations
- 20.
What are the most clinically and cost-effective non-pharmacological interventions for helping the long-term recovery of people with delirium superimposed on dementia?
For more details on the research recommendation made, and the rationale behind it, see appendix L.
18.2. Management strategies for people living with dementia and co-existing physical long term conditions
Review question
- What are the optimal management strategies (including treatments) for people living with dementia with co-existing physical long term conditions?
18.2.1. Introduction
The aim of this review question was to identify the most effective interventions/strategies to manage medical comorbidities (for example diabetes, cardiovascular disease etc.) in people living with dementia and to consider if the most effective interventions and strategies used for treating medical comorbidities in people living with dementia are different from the interventions and strategies used for people with medical comorbidities who do not have dementia.
The focus of the question was to consider strategies that reduce the progression of coexisting conditions and to specifically focus on people living with dementia and the following co-existing long term conditions:
- Continence
- Recurrent falls (rehabilitation)
- Hypertension
- Diabetes
- Risk of Cardiovascular disease (anticoagulation)
- Sensory impairment
The review identified studies that fulfilled the conditions specified in Table 101. For full details of the review protocols, see Appendix C.
Table 101
Review summary: management of physical health comorbidities.
18.2.2. Evidence review
A systematic search identified 9,306 references filtered by randomised controlled trials. The references were screened on their titles and abstracts and 100 references were ordered for full text. The included studies and references of any eligible systematic reviews were also screened and full text copies of any appropriate studies were ordered, giving a total of 119 full-text studies. 112 papers were subsequently excluded because they did not fit the inclusion criteria (see Appendix F for a detailed list of excluded studies and reasons for their exclusion). Seven randomised controlled trials were included in the evidence review.
Four studies were included for strategies to treat risk of cardiovascular disease (2 studies focused upon strategies to treat hypertension, 1 of these trials compared pharmacological treatment with a PPAR-ˠ agonist (telmisartan) to pharmacological treatment with a CCB (amlodipine), the other compared the use of relative-measured blood pressure and automated blood pressure measurement). One study was included for cerebrovascular lesions (comparing a standardised protocol approach, involving both pharmacological and behavioural strategies with a standard care approach which was non-specific to vascular care) and 1 study for diabetes (comparing pharmacological treatment with a PPAR-ˠ agonistpioglitazone to no treatment).
Three studies were included for treating incontinence. All 3 trials compared behavioural strategies.
One additional study was included from rerun searches conducted at the end of the guideline an was on sensory impairment, comparing active hearing aids to placebo hearing aids in people living with Alzheimer’s disease and moderate age related hearing loss.
No studies were identified as relevant for falls rehabilitation.
A summary of the characteristics of the included studies is provided in Table 101. Data from the included studies were extracted into evidence tables. See Appendix E for the full evidence tables, and for the full GRADE profiles see Appendix G. References for the included studies are given in appendix I.
18.2.2.1. Description of included studies
| Study reference | Study design | Study population | Intervention & comparator | Relevant outcomes | Comments |
|---|---|---|---|---|---|
| Dementia and cardiovascular risk (hypertension, CV risk factors, diabetes) | |||||
| Hypertension | |||||
| Kume (2011) | Randomised open-label trial | 20 patients with mild dementia (CDR=1) and hypertension (NINCDS-ADRDA criteria) | Participants received either telmisartan or amlodipine |
| Location: Japan Follow up: 6 months |
| Plichart (2013) | Randomised open comparative study | 66 outpatients diagnosed with dementia (based on DSM-IV criteria) and hypertension (BP ≥140/90mmHg at two or more occasions) | Participants received either relative measured home blood pressure measurement or automated blood pressure measurement |
| Location: France Follow up 3 days |
| Vascular disease | |||||
| Richard (2009) | Randomised multi centre controlled trial | 130 patients with probable Alzheimer’s disease (according to CEMDE and white matter lesions of vascular origin | Intervention: Multi component vascular care (for hypercholesterolemia and hypertension) involving pharma treatment 8 to 100 mg acetylsalicylic acid; 50 mg pyridoxine; 0.5 mg folic acid per day and a stepped protocol of dietary, exercise and lifestyle changes Control: Standard care |
| Location: Netherlands 2 year follow up |
| Diabetes | |||||
| Sato (2011) | Randomised open label controlled trial | 42 patients with mild Alzheimer’s disease (CDR 0.5 or 1) and Type II Diabetes (diagnosis based on NINCDS-ADRDA criteria) | Intervention: 15-30mg pioglitazone Control: No treatment |
| Location Japan 6 month follow up |
| Continence | |||||
| Ostaskiewicz (2010) | Systematic review | RCTs and quasi RCTs of timed voiding interventions for management of incontinence in people living with dementia | 3 (1 RCT, 1 mixed design and 1 controlled cross over study) |
| Location: Multinational |
| Jirovec 2001 | Randomised controlled trial | Carers of 118 patients with cognitive impairment (based on SPMSQ) and urinary incontinence | Intervention: Carers taught an individualised toileting schedule program Control: No precise details |
| Follow up 6 months |
| Engberg (2002) | Randomised controlled cross-over study | 19 cognitively impaired older adults (MMSE<24) with urinary incontinence | Intervention: Prompted voiding initially every 2 hours, Control: No precise details |
| After 8 weeks participants in control group were crossed over to treatment group |
| Age related hearing loss | |||||
| Adrait (2017) | Randomised controlled semi-crossover study | 48 people living with probable Alzheimer’s disease (NINCDS-ADRDA) and age-related hearing loss | Intervention: Active hearing aids Control: Placebo hearing aids |
| Location: France After 6 months the participants in control group had hearing aids activated |
Abbreviations NINCDS and ADRDA = National Institute of communicative disorders and Stroke and the Alzheimer’s disease and related disorders association criteria; BS = Barthel Index score; DSM- IV Diagnostic & statistical manual 4th ed; MMSE= mini mental state examination; CDR= clinical dementia rating; CEMDA= Cambridge Examination for Mental Disorders in Elderly; SPMSQ= short portable mental status questionnaire
18.2.3. Health economic evidence
A total of 3,078 citations was returned from the search for this question. Following review of titles and abstracts, the full text of 1 study was retrieved for detailed consideration, but it did not meet the inclusion criteria. Therefore, no relevant cost–utility analyses were identified for this question. For full details of the literature review, please see Appendix D.
18.2.4. Evidence statements
18.2.4.1. Hypertension
Very low-quality evidence from 1 RCT of 20 participants with Alzheimer’s disease and hypertension found the mean difference in systolic blood pressure, diastolic blood pressure and pulse rate at 6 months was not significantly different for participants receiving telmisartan, compared with participants receiving amlodipine. The mean difference in cognitive and functional outcomes (MMSE scores, ADAS-Cog and WMS-R [logical memory scores]) at 6 months were also not significantly different for participants receiving telmisartan, compared with participants receiving amlodipine.
Low to moderate-quality evidence from 1 randomised comparative crossover study of 60 participants with cognitive impairment and hypertension found the mean systolic blood pressure readings were significantly higher when blood pressure readings were taken by a relative compared with 24 hour readings or daytime only readings taken from an ambulatory blood pressure measurement device. The mean diastolic blood pressure readings were not significantly different for readings taken by a relative compared with 24 hour or daytime readings taken from an ambulatory blood pressure measurement device.
18.2.4.2. Cardiovascular risk
Moderate -to high-quality evidence from 1 RCT with 94 participants with Alzheimer’s disease and cerebrovascular lesions found the mean difference in change over 2 years for systolic blood pressure readings, diastolic blood pressure readings, HBA1c, and HDL cholesterol did not differ significantly for participants receiving a multicomponent vascular care programme to participants receiving standard care. However, after 2 years, the total cholesterol readings and LDL cholesterol readings had significantly reduced for participants receiving the vascular care programme compared with those receiving standard care.
The change in cognitive outcomes (as measured by MMSE, IDDAD and revised MBPC) did not significantly differ after 2 years for participants receiving a multicomponent vascular care programme to participants receiving standard care.
18.2.4.3. Diabetes
Low-quality evidence from 1 RCT with 42 participants with mild Alzheimer’s disease and type II diabetes mellitus found no difference in fasting plasma glucose, HBA1c, or fasting insulin levels at 6 months between participants receiving pioglitazone compared with those who did not receive a drug therapy. The clinical outcomes (as measured by MMSE, ADAS-Cog and WMS-R logical memory) at 6 months did not differ for participants receiving pioglitazone compared with those who did not receive a drug therapy.
18.2.4.4. Incontinence
Low-quality evidence from 1 RCT of 74 participants living at home with cognitive impairment and incontinence found the number of participants showing decreased incontinence at 6 months did not differ significantly for those that received an individual scheduled toileting programme compared with those who did not receive the individualised programme. After 6 months, there was no significant difference in mean incontinence frequency for those participants that received an individual scheduled toileting programme compared with those who did not receive the individualised programme. There was no difference in cognitive ability (as measured by MMSE) or mobility (as measured by a composite mobility score) at 6 months for those that received an individual scheduled toileting programme compared with those who did not receive the individualised programme.
Very low-quality from 1 RCT of 19 participants living at home with cognitive impairment and incontinence found no significant difference in the reduction of incontinent episodes, reduction in daytime incontinent episodes per day after 8 weeks for participants receiving prompted voiding compared with a control group who did not receive prompted voiding. The mean percentage reduction in daytime wet and day and night time wet after 8 weeks was not significantly different for participants receiving prompted voiding compared with a control group who did not receive prompted voiding.
Very low- to moderate-quality evidence from 1 RCT of 174 participants with urinary incontinence and dementia found that after 2 months, the number of participants showing reductions in incidence of daytime incontinence did not differ significantly for participants receiving timed voiding compared with those receiving usual care. The number of participants with reductions in incidence of night time incontinence was significantly greater for participants receiving timed voiding compared with usual care. After 2 months the number of participants whose pad test indicated reductions in the volume of incontinence did not significantly differ for participants receiving timed voiding compared with usual care.
18.2.4.5. Age related hearing loss
Low- to moderate-quality evidence from 1 RCT of 36 participants with age related hearing loss and Alzheimer’s disease could not differentiate activities of daily living (ADCS-ADL); behavioural and neuropsychological symptoms (NPI); Quality of life (ADRQL) or carer burden (ZBI) at 6 months follow up for people using an active hearing aid, compared with those using a placebo hearing aid, but did find an improvement in quality of life at 12 months.
18.2.4.6. Health economic evidence
No health economic evidence was identified for this review question.
18.2.5. Evidence to recommendations
| Relative value of different outcomes | The committee agreed that the evaluation of any intervention for this question relied on 2 key outcomes. First, how well the intervention manages the comorbidity itself (where the primary outcome measures would be the same as for evaluations of that condition in people without dementia), and secondly whether this treatment leads to any improvement or worsening of the person’s dementia. It was noted that there was a considerable body of evidence about the impact of managing cardiovascular risk factors on the progression of dementia (which is covered elsewhere in this guideline through a question on modifying risk factors), but most of this evidence was not eligible for inclusion here, as only outcomes relating to the person’s dementia were reported, without any data on the impact on the co-morbidity itself. |
|---|---|
| Trade-off between benefits and harms | Diabetes The committee agreed that intensive interventions to improve diabetic control may not always be appropriate in people with severe dementia, as the benefits may not be sufficient to justify the distress/other harms these interventions can cause. It was noted that the diabetes guideline has a recommendation that it may be appropriate to relax the target HbA1c level for people with significant comorbidities in whom intensive management would not be appropriate. The committee agreed that severe dementia was a condition which would often meet this threshold, and therefore it was felt appropriate to cross-refer to this recommendation. It was agreed, however, that whilst this recommendation established the principle that it is appropriate to reduce the intensity of treatment in some individuals, there was no evidence to establish which individuals were likely to benefit from the withdrawal of treatment, and what the most appropriate point in the person’s dementia trajectory to withdraw treatment would be. Therefore, the committee agreed there would be value in additional research specifically looking at what the impact of the withdrawal of intensive treatments for diabetic control would be in people with severe dementia, and this would include attempting to identify subgroups of people in whom withdrawal is or is not beneficial. Cardiovascular disease The committee agreed that none of the evidence identified was sufficient on which to make recommendations. However, as with diabetes above, it was felt to be likely there were people with severe dementia in whom it was appropriate to withdraw treatments as the potential benefits would not be sufficient to justify the distress/other harms cause. In the absence of evidence no recommendations were made on this topic, but a research recommendation was made that trials should be conducted looking at the impact of the withdrawal of preventative vascular interventions for people with severe dementia. Falls No evidence was identified looking at the most appropriate interventions for rehabilitation following recurrent falls. Therefore, the committee decided not to add to the recommendations around falls made in the review question around the management of intercurrent illness. Incontinence The committee discussed the NICE guideline on urinary incontinence in neurological disease. This guideline recommends the use of antimuscarinic drugs to treat overactive bladder, but also mention they may be associated with confusion. The committee agreed it was important to highlight this is a particular concern in people with dementia, and that therefore antimuscarinic drugs should be avoided if possible in this population. There is additionally a NICE technology approval on mirabegron, which says it is an appropriate treatment for overactive bladder in people for whom the side effects of antimuscarinics would be unacceptable. The committee highlighted that people with dementia would fulfil this criteria, and therefore should be eligible for mirabegron treatment. Finally, the NICE guideline on faecal incontinence contains a specific recommendation around management in people with cognitive issues, and again it was felt appropriate to cross-refer to this recommendation. In the absence of any high-quality evidence around interventions to reduce incontinence levels in people living with dementia, the committee felt it appropriate to make a research recommendation around this topic. Sensory impairment No evidence was identified looking at the most appropriate interventions for managing sensory impairment in people living with dementia. The committee noted the NICE guideline on hearing loss contained recommendations on assessments for hearing loss in people with suspected or diagnosed dementia, and agreed it was appropriate to cross-refer to these recommendations. The committee also agreed it was appropriate to include an equivalent recommendation around eye tests for people living with dementia, as this was also an important issue where the presences of visual impairment is higher in people living with dementia than those without.. |
| Trade-off between net health benefits and resource use | No health economic evidence was identified for this review question and it was not prioritised for economic modelling. The committee agreed that since the recommendations made either referred to recommendations from technology appraisals and other NICE guidance (and therefore any economic considerations should have been considered during those earlier evaluations) or were around potential reductions in the intensity of treatment (and therefore likely to be cost-saving) and that it was thus unlikely any of the recommendations made would lead to a substantial increase in resource use. |
| Quality of evidence | The committee agreed that the evidence presented was of a generally low quality, and did not provide sufficiently robust evidence to make recommendations. It was noted that the evidence search for this question was limited to trials in a population of people with dementia, and that another source of evidence was in published guidelines looking at populations with comorbidities of interest, where people with dementia/cognitive impairment may have been considered as a subgroup. Specific consideration was given to NICE guidance around diabetes and incontinence, and potentially relevant recommendations from these guidelines which could be cross-referred to were identified. The recommendations arising from these considerations are discussed in the trade-off between benefits and harms section above. |
| Other considerations | The committee noted there was often concern that people living with dementia were often not offered equitable access to treatment for comorbidities they may have, and agreed it was important to make a statement that people with dementia should be offered equivalent access to treatments for comorbidities. As part of this, it agreed that it was appropriate to cross-refer to the NICE guidance on manging multimorbidity, and on older people with social care needs and multiple long-term conditions. |
18.2.6. Recommendations
- 119.
Ensure that people living with dementia have equivalent access to diagnosis, treatment and care services for comorbidities to people who do not have dementia. For more guidance on assessing and managing multimorbidity, see the NICE guidelines on multimorbidity and older people with social care needs and multiple long-term conditions.
- 120.
For more guidance on providing support for older adults with learning disabilities, see the NICE guideline on care and support of people growing older with learning disabilities.
- 121.
For guidance on setting HbA1c targets for people living with severe dementia who have type 2 diabetes, see recommendation 1.6.9 in the NICE guideline on type 2 diabetes in adults.
- 122.
For guidance on pharmacological treatment of overactive bladder, see the NICE technology appraisal on mirabegron for treating symptoms of overactive bladder.
- 123.
For guidance on treating faecal incontinence, see recommendations 1.7.2 and 1.7.8 in the NICE guideline on faecal incontinence.
Sensory impairment (such as sight loss, hearing loss, or both)
- 124.
For guidance on hearing assessments for people with suspected or diagnosed dementia, see adults with suspected dementia in the NICE guideline on hearing loss
- 125.
Encourage people living with dementia to have eye tests every 2 years. Consider referring people who cannot organise appointments themselves.
18.2.7. Research recommendations
- 21.
What is the effectiveness of interventions to improve faecal and urinary continence in people living with dementia?
- 22.
What is the impact on cognition, quality of life and mortality of withdrawing treatments for the primary and secondary prevention of vascular outcomes in people with severe dementia?
- 23.
What is the impact on cognition, quality of life and mortality of withdrawing intensive treatments for diabetic control in people with severe dementia?
For more details on the research recommendations made, and the rationale behind them, see appendix L.
18.3. Managing mental health conditions alongside dementia
Review question
- What are the optimal management strategies (including treatments) for people with dementia and an enduring mental health condition?
18.3.1. Introduction
The aim of these review questions was to identify the most effective methods for managing pre-existing mental health comorbidities in people with dementia. This is distinct from the question of managing dementia-emergent mental health problems, which is addressed elsewhere in this guideline. All mental health conditions were eligible for inclusion but particular emphasis was placed on the following:
- Anxiety
- Depression
- Psychotic disorders
- Substance use disorders
- Personality disorder
The review identified studies that fulfilled the conditions specified in Table 102. For full details of the review protocol, see Appendix C.
Table 102
Review summary: management of mental health comorbidities.
18.3.2. Evidence review
A systematic search identified 7,599 references. The references were screened on their titles and abstracts and 80 references were ordered for full text review, with an additional 5 papers identified through reference screening of included articles. All 85 papers were subsequently excluded because they did not fit the inclusion criteria (see Appendix F for a detailed list of excluded studies and reasons for their exclusion). In particular, 21 papers did provide information on people with dementia and one or more of depression, anxiety and psychosis, but in all these papers the onset of these symptoms came after the diagnosis of dementia, and therefore these papers were included in the section on illness-emergent non-cognitive symptoms.
18.3.2.1. Description of included studies
No relevant studies were identified for this review question.
18.3.3. Health economic evidence
No health economic evidence was identified for this review question.
18.3.4. Evidence statements
No evidence was identified for this review question.
18.3.4.1. Health economic evidence
No health economic evidence was identified for this review question.
18.3.5. Evidence to recommendations
| Relative value of different outcomes | The committee agreed that the evaluation of any intervention for this question relied on 2 key outcomes. First, how well the intervention manages the mental health comorbidity itself (where the primary outcome measures would be the same as for evaluations of that condition in people without dementia), and secondly whether this treatment leads to any improvement or worsening of the person’s dementia. Some of the treatments for specified mental health comorbidities (e.g. antipsychotics) are known to cause harms in people with dementia, and therefore identified trials of the effectiveness of these medicines in managing mental health comorbidities in people with dementia would be valuable, as they would enable to trade-offs between these benefits and harms to be appropriately quantified. |
|---|---|
| Trade-off between benefits and harms | The committee agreed that the people in this group were likely to be complex to manage, because of the two way interaction between the two conditions. First, the presence of many mental health comorbidities has the potential to make dementia more difficult both to identify and manage and, conversely, the development/progression of dementia is likely to make management of the underlying mental health comorbidity more difficult. The committee discussed whether, in the absence of evidence, there were any useful consensus recommendations that could be made for this group. However, it agreed that any such recommendations would either need to be vague (to capture the entire spectrum) and therefore not provide useful guidance, or to be very specific and risk being inappropriate for many individuals within that group. The committee therefore agreed that no recommendations about management of people with dementia and long-term mental health comorbidities could be made. The committee agreed however, that future research in this area would be valuable. It has been recognised for a long time that this is a complex patient group to manage, and yet there are still no randomised controlled trials in this population. It therefore recommended that trials should be conducted, looking at the optimum management strategies for people with an enduring mental health problem who go on to develop dementia. |
| Trade-off between net health benefits and resource use | No health economic evidence was identified for this review question and it was not prioritised for economic modelling. The committee agreed that the people specified in this review question were likely to be complex and therefore potentially expensive to manage. This meant that randomised controlled trials in this area are likely to be valuable, as they have the potential not only to improve patient care, but also to provide cost savings if more efficient and co-ordinated ways can be found to manage care for these individuals. |
| Quality of evidence | No evidence was identified for this review question. The committee agreed this is likely to be because of the relatively small numbers of people available for such trials (whilst a considerable number of people do have dementia and a mental health comorbidity, the number of different mental health comorbidities means there is not a large number in any individual group), and the complexity in conducting such trials. It also agreed that the population of people who develop a mental health comorbidity after a diagnosis of dementia is a larger group, but this is covered in a separate question in this guideline. |
| Other considerations | The committee noted that the prevalence of mental health problems is higher in people with learning disabilities than in the general population, and that there are particular challenges associated with managing mental health problems in people with learning disabilities and mental health issues who develop dementia. It was agreed that it would be highly desirable to be able to provide advice on how to manage dementia in this population, but the lack of relevant evidence did not make this possible. It was reinforced that this was an important subgroup for consideration throughout the guideline, and any evidence found in other questions relating to this population should be given a high priority for consideration. |
18.3.6. Recommendations
No recommendations were made
18.3.7. Research recommendations
- 24.
What are the optimal management strategies for people with enduring mental health problems (including schizophrenia) who subsequently develop dementia?
For more details on the research recommendation made, and the rationale behind it, see appendix L.
- Assessing and managing comorbidities - DementiaAssessing and managing comorbidities - Dementia
- CYP17A1 cytochrome P450 family 17 subfamily A member 1 [Callithrix jacchus]CYP17A1 cytochrome P450 family 17 subfamily A member 1 [Callithrix jacchus]Gene ID:100400572Gene
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