Table 5.
Summary of Recommendations From the Six Selected Guidelines
| Rehabilitation domain | Target area covered | Guidelines | Examples of recommendations (strength of recommendation; quality of evidence)a |
|---|---|---|---|
| Mental cognitive functions | Cognitive Consciousness Orientation Memory Thought, decision making Psychic stability Perceptual Psychomotor Sleep Behavioral symptoms Psychiatric symptoms Prevention of suicide |
EHDN GAC NICE NURSE OT |
Do not offer noninvasive brain stimulation to treat mild to moderate Alzheimer’s
disease (S; VL to L) Do not offer acupuncture to treat dementia (S; VL to L) Do not recommend Souvenaid to people with moderate to severe Alzheimer’s disease (S; M) Do not offer ginseng, vitamin E supplements, or herbal formulations to treat dementia (S; M) Do not offer cognitive training to treat mild to moderate Alzheimer’s disease (S; VL to M)b Do not offer interpersonal therapy to treat cognitive symptoms of mild to moderate Alzheimer’s disease (S; NA) May use multiple rehabilitation strategies to improve/stabilize transitorily cognitive functions (NP; M) Offer group cognitive stimulation therapy to people with mild to moderate dementia (S; M) Consider group reminiscence therapy to people with mild to moderate dementia (S; M) Assess for delirium risk factors (NP; H to VL) Monitor delirium for changes in symptoms (NP; VL) Educate people who are at risk for or are experiencing delirium (NP; VL) Use caution when recommending sensory devices to facilitate way finding (EO; NA) Use signage, environmental design principles, personal memorabilia, and other environmental cues (W/C; NA) May consider domain-specific transcoding (verbal and visual) to help recalling items (EO; NA) May offer compensatory strategies (establishing and keeping a regular daily routine, organizing a schedule, keeping a diary, and drawing up a “to do” list; EO; NA) May use cognitive stimulation to improve executive functioning (EO; NA) Assess the person’s ability to understand and appreciate information relevant to making decisions (NP; VL) Explore environmental, psychological, or somatic causes for frustration, distress, and irritability before initiating pharmacological treatment (S; VL) Offer a comprehensive assessment for changed behaviors and psychological symptoms at an early opportunity (S; VL) Consider behavioral strategies to address irritability (EO; NA) Offer a trial of selective serotonin reuptake inhibitor (SSRI) antidepressants for agitation (S; M) Avoid antipsychotics and antidepressant medications with anticholinergic effects (S; VL) Offer personalized activities to promote engagement, pleasure, and interest (e.g., behavioral management, music and/or dancing, reminiscence therapy, and massage; S; NA) Potential underlying cause of sleep-related difficulties should be investigated (EO; NA) Do not offer melatonin to manage insomnia (S; VL to M) A personalized multicomponent sleep management approach (e.g., sleep hygiene education, exposure to daylight, exercise, and personalized activities) for sleep problems (W/C; M to H) Selectively use multisensory interventions and ambient music (outside of mealtimes), routinely integrated into occupational therapy plans of care when the goal is to improve behavior (S; H) Assess the risk of suicide (NP; VL) |
| Mental emotional functions | Mental health Emotional functions Energy and drive functions (apathy) Depression Anxiety |
EHDN GAC NICE NURSE |
Offer a comprehensive assessment at an early opportunity before starting treatment (NP; VL) Use objective measurement of behavioral and psychological symptoms of dementia should be undertaken using tools with strong psychometric properties and used to monitor the type and patterns of behaviors (NP; VL) Identify, monitor, and address environmental, physical health, and psychosocial factors to prevent behaviors and psychological symptoms (NP; VL) Offer psychosocial and environmental interventions to reduce distress as a first option (S; M) Ensure continued access to psychosocial and environmental interventions for distress while on and after antipsychotics (S; VL to L) Recommend personalized cognitive stimulation, establishing routines and a structured program of activities for apathy (EO; NA) Explain the various aspects and causes of apathy to the family circle (EO; NA) Assess and monitor for depression and changes in symptoms/response to treatment (NP; VL) Seek urgent medical attention for those at risk of suicide (NP; VL) Consider psychological treatments (e.g., psychotherapy and cognitive behavioral therapy) for mild to moderate depression and/or anxiety (in mild to moderate dementia only; W/C; VL to H) Offer multicomponent interventions involving tailored activities for depression and/or anxiety or agitation (W/C; VL to L) |
| Vision impairment | Seeing functions | NICE | Encourage eye tests every 2 years (W/C; L) |
| Speech, language, and communication | Mental functions
of language Voice Articulation Communication |
EHDN NICE NURSE OT |
Multiple rehabilitation strategies (speech therapy, occupational therapy, cognitive and psychomotricity; NP; M) Comprehensive assessment of language and other factors (mood, motivation, and behavior; EO; NA) Assessment of language including: orofacial movements, respiratory function in speech, breath control and coordination, phonation, articulation, intelligibility, comprehension and communication abilities (NP; L) Offer carer communication skills training, either alone or in combination with memory aid training (S; H) Communication strategies and techniques including management options and advice on facilitation of communication (EO; NA) |
| Dysphagia management | Ingestion functions (vomiting/swallowing) | EHDN GAC |
Routinely investigate fecal infarction where there is constipation/diarrhea and/or vomiting (EO; NA) A multidisciplinary approach that may include Speech and occupational therapists (EO; NA) Avoid artificial feeding in people with severe dementia (W/C; VL) Consider nutritional support, including artificial/tube feeding, only for transient dysphagia (W/C; VL) Apply ethical and legal principles when making decisions about introducing or withdrawing artificial nutritional support (W/C; VL) |
| Nutrition | Water, mineral, and electrolyte balance functions Prevention of malnutrition |
EHDN GAC |
Ensure patients are well hydrated, and monitor their fluid and electrolyte balance adjusted (EO; NA) Early assessment by a dietician or nutritionist (EO; NA) Regular timely reviews of nutritional needs (EO; NA) Consider weight loss, swallowing ability, cognitive changes, behavior, mood and general functional ability together (NP; L) Use screening tools for malnutrition (e.g., Malnutrition Universal Screening Tool; EO; NA) Offer adequate nourishment and hydration through maintaining a healthy, balanced diet and to receive food and drink by mouth (S; VL) Consider Montessori methods and spaced retrieval methods to promote self-feeding (S; M) |
| Pain management | Sensation of pain | GAC NICE NURSE |
Assess and monitor for pain (NP; H and VL) using a structured, observational and population-specific pain assessment tool (W/C; VL to M) Behavioral change or worsening of involuntary movements should trigger a comprehensive assessment (EO; NA) Analgesic medication should be trialed using a stepwise approach for a defined time period, particularly if opioids are used (S; L) |
| Bowel and bladder management and toileting | Defecation Urination |
EHDN | Conduct routine assessment for digestive disorders in HD (EO; NA) Investigate fecal impaction routinely (EO; NA) Investigate a precipitating factor for urinary incontinence (EO; NA) Implement simple lifestyle strategies to manage bladder control (EO; NA) |
| Sexual functions and intimate relationships | Sexual functions | EHDN | Identify the existence of sexual disorders and make a referral to a specialist (EO; NA) Where hypersexuality poses a risk to others, specific measures should immediately be put in place (referral to a psychiatrist, alerting, isolation, etc.; EO; NA) |
| Respiration functions | Respiratory Respiratory muscle Coughing |
EHDN HD_PT |
Provide regular breathing exercises (W/C; H and VL) Ensure that care plans for individuals with HD with late-stage disease include appropriate positioning and seating, active movement, position, respiratory exercise, and education (EO; VL) |
| Motor functions and mobility | Muscle power Exercise tolerance Involuntary movement reaction Maintaining a body position Gait and walking Driving |
EHDN HD_PT OT |
Prescribe aerobic exercise paired with upper and lower body strengthening and balance exercises to people with HD (S; H to M)
Prescribe an individually tailored program to improve postural control to people with HD (W/C; M) Prescribe one-on-one supervised gait training to improve spatiotemporal measures of gait (W/C, M) Provide direct assessment of driving capacities (EO; NA) |
| Activities of daily living | Carrying out daily routine Activities of daily living |
EHDN GAC OT |
Offer occupational therapy interventions (S; L) Establish a regular routine and milestones to manage time better (EO; NA) May use external stimuli (reminders, alarms; EO; NA) Discourage use of cognitive stimulation for the purpose of ADL maintenance or improvement (A; L) Occupational therapists should use cognitive training and cognitive rehabilitation selectively (EO; mixed evidence) Use errorless learning and prompting routinely (S; H) Routinely provide exercise interventions (S; H) |
| Exercise and fitness | Physical activity | GAC | Encourage to exercise (S; L) |
| Fall prevention | Prevention of falls | EHDN NICE OT |
Use wander gardens with caution by occupational therapists (EO; VL) Do not use ambient music for the purpose of reducing falls (A; L) Make the environment safe (padding furniture) to minimize falls and shocks (EO; NA) Educate carers on the acquisition and use of monitoring devices for falls prevention (S; H) |
| Interpersonal interactions and relationships | Social interactions and relationships | OT | Use cognitive stimulation to improve social participation (S; H) |
| Carer/family support | Caregiver needs Caregiver health and well-being Caregiver skills |
GAC NURSE OT HD_PT |
Assess and review carers’ needs regularly and advise them about their right to and how to access a formal assessment (S; VL) Assess carers communication style when interacting with the person with dementia (S; VL) Support to build resilience and maintain overall health and fitness (S; NA) Offer psychological therapy (S; VL) and caregiver counseling (NP; L) Consider a reframing therapy approach for anxiety, stress, and depressive symptoms (S; H) Offer carer support groups (S; H) Offer (multicomponent) psychoeducational interventions (S; H) Offer communication partner training, meaningful activity planning, environmental redesign and modification, and problem-solving and management planning (S; L) |
| Self-management | Looking after one’s health | EHDN GAC HD_PT NICE NURSE |
Provide individually tailored written and verbal information (S; VL) about: dementia in general (S; VL), social support groups (S; VL) and appropriate services (S; VL), depression (NP; VL), good oral hygiene (NP; L), and accessing resources and support (S; VL) |
Notes: GAC = Guideline Adaptation Committee. Clinical Practice Guidelines and Principles of Care for People with Dementia; RN = Registered Nurses’ Association of Ontario. Delirium, Dementia, and Depression in Older Adults: Assessment and Care (2nd ed.); OT = American Occupational Therapy Association. Occupational therapy practice guidelines for adults with Alzheimer’s disease and related major neurocognitive disorders; NICE = National Institute for Health and Care Excellence. Dementia: assessment, management and support for people living with dementia and their carers; EHDN = European Huntington’s Disease Network. International Guidelines for the Treatment of Huntington’s disease; HD_PT = Clinical practice recommendations to guide physical therapy practice for Huntington’s disease. Strong recommendation with moderate-/high-quality evidence is in bold. This table is a summary of all recommendations after removal of duplicates. Those duplicated recommendations with inconsistent ratings for the strength of recommendation and/or the quality of evidence have been marked as a range (e.g., VL to L).
aThe strength of each recommendation: strong (S), weak or conditional (W/C), expert opinion (EO), not provided (NP). The quality of evidence for each recommendation: high (H), moderate (M), low (L), very low (VL), not available (NA).
bA recent Cochrane systematic review by Bahar-Fuchs et al. (2019) reports a modest positive effect of cognitive training on global cognition immediately post treatment for people with mild to moderate dementia (moderate certainty of evidence).