Assessment, Diagnosis, Care and Support For People With Dementia and Their Carers

Scottish Intercollegiate Guidelines Network. (2023).

Edinburgh (Scotland): Scottish Intercollegiate Guidelines Network, (168), 1-116.

<div>This guideline provides recommendations regarding assessment, diagnosis, care, and support for people with dementia and their care providers.</div>

Scottish Intercollegiate Guidelines Network

<div>Dementia diagnosis should be discussed and provided by an interprofessional team of specialists with expertise in dementia (e.g., occupational therapy, speech-language pathology) based on functional assessment, case history, and other physical examinations (e.g., imaging; Good practice point). Diagnosis discussions should:</div> <div> <ul> <li>occur early to improve the likelihood of timely access to support and services (Strong for recommendation);</li> <li>be person-centered and be provided in stages to allow time for information processing and acceptance of cognitive changes (Good practice point);</li> <li>include clear, empathetic, and realistic information and counseling that may address beliefs, expectations, and misconceptions (Strong for recommendation).</li> </ul> <div>Healthcare clinicians should be aware of and sensitive to pre-death grief at diagnosis and throughout the stages of dementia (Strong for recommendation).</div> </div>

<div>Brief cognitive tests demonstrating acceptable diagnostic accuracy for individuals with dementia include:</div> <div> <ul> <li><strong>Rapid direct tests:</strong> Six-item Screener (SIS), General Practitioner Assessment of Cognition (GPCOG), Clock Drawing Test, Mini-Cog, Memory Impairment Screen (MIS), Six Item Cognitive Impairment Test (6-CIT), and Mini-Addenbrooke's Cognitive Examination (ACE);</li> <li><strong>Extended direct tests:</strong> Free-Cog, Montreal Cognitive Assessment (MoCA), Rowland Universal Dementia Assessment Scale (RUDAS), Mini-Mental State Examination (MMSE) or ACE-III;</li> <li><strong>Self-completion questionnaires:</strong> The Test Your Memory (TYM);</li> <li><strong>Informant questionnaires:</strong> &nbsp;Eight-item Informant Interview to Differentiate Aging and Dementia (AD8) or Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE); and</li> <li><strong>Remote cognitive assessments:</strong> Telephone Interview for Cognitive Status (TICS), TICS modified, Tele-MMSE and Tele-Free-Cog (Strong for recommendation).</li> </ul> </div>

<div>Service providers should coordinate dementia services that meet the needs, address the concerns, and maximize the engagement of individuals with dementia and their care providers (Strong for recommendation). Services should be flexible and individualized and may include:</div> <div> <ul> <li>assistance with activities of daily living;</li> <li>treatment for memory loss and declining cognitive function;</li> <li>communication supports;</li> <li>emotional supports for managing stress and/or distress;</li> <li>support that balances the individual's safety with their need for independence;</li> <li>education about dementia;</li> <li>anticipatory care planning with a defined care pathway to ensure continuity of care; and&nbsp;</li> <li>resources for care providers (Strong for recommendation).</li> </ul> </div>

<div>Dementia services should be provided to the individual and their care providers in their preferred language with culturally appropriate considerations (Strong for recommendation). Information should be tailored to the needs, preferences, and culture of the individual with dementia and their care providers (Good practice point).</div>

<div>When considering remote technology to provide dementia services, clinicians may take into account the following factors for individuals with dementia and their care providers:</div> <div> <ul> <li>their preferences regarding in-person and remote care;</li> <li>their level of technical skill for using remote technology;</li> <li>the training and education needed to improve their ease of technology use;</li> <li>changes required for the home environment; and&nbsp;</li> <li>cost, security, privacy, and ethical considerations for remote care (Conditional recommendation).</li> </ul> </div>

<div>From the point of diagnosis, clinicians should offer people living with dementia flexible, needs-based palliative care that accounts for how unpredictable dementia progression can be.</div> <div> <ul> <li>For individuals with dementia who are approaching the end of life, use an anticipatory healthcare planning process.</li> <li>Involve the patient and their care partners, as appropriate and as far as possible.</li> <li>Anticipatory care planning discussions should be tailored to their needs, readiness to engage, and capacity of the patient and should consider the needs of their care partners and triggers for discussions (e.g., diagnosis, change/decline in status, change in place of residence).</li> <li>"Anticipatory care planning may involve a series of conversations over time to allow clarification, reflection and updates to the plan to reflect any changing needs. Early discussions are beneficial, as the capacity of the person with dementia diminishes as the disease progresses" (p. 69).&nbsp;</li> <li>Anticipatory planning may take place in any care setting (e.g., family home, primary care, hospital, skilled nursing facility).&nbsp;&nbsp;</li> <li>Anticipatory care planning discussions should allow for sufficient time and be conducted in a quite location free from distraction. The location should facilitate discussion and protect confidentiality.&nbsp;</li> <li>Use the principles of best-interest decision-making if the patient no longer has the capacity to make decisions about their care.</li> <li>Clinicians should educate patients and their care partners on the progressive nature of dementia and what to expect at different stages of the illness.</li> <li>Review the person's needs and wishes after every transition. This should include a review of their care and support plans and any advance care and support plans.</li> <li>Clinicians and those involved in the care of people with dementia should be aware that palliative care is ongoing from diagnosis to end of life. Anticipatory care planning discussions should be reviewed and updated at a frequency determined by the pace of disease progression and any changing needs.&nbsp;</li> <li>Clinicians who support anticipatory planning should be knowledgeable about dementia and dementia care. Those leading this process should at least be at enhanced or expert level of practice.</li> <li>The most up to date anticipatory care plan should be shared with care partners and be easily accessible when health or care decisions are being made (Strong for recommendation).</li> </ul> </div>