Phased Dementia Pathway

• Provides direction and guidance for problem solving and decision making
• Creates clinical pathway recommendations
• Reviews specific recommendations by stage or phase of dementia to support current and evidence-informed care
• Encourages the interdisciplinary team to complete a self-assessment to improve the provision of care that is current and evidence-informed
• Educates the interdisciplinary team on what's new in dementia care, particularly “upstream” in the areas of pre-clinical (risk reduction/brain health promotion) or mild cognitive impairment
• Helps the interdisciplinary team understand how clinical pinch-points can affect “downstream” practices
• Provides an interdisciplinary approach to dementia care
• Addresses orientation or continuing education needs by managers and program planners

Our Phased Dementia Pathway assumes the interdisciplinary team has a basic working knowledge of the various common diseases that can cause cognitive loss and dementia, such as:

• Alzheimer’s Disease 
• Lewy Body Dementia 
• Vascular Dementia
• Frontotemporal Dementia (including Pick’s disease)
• Creutzfeldt-Jakob Dementia
• Mild Cognitive Impairment

The Phased Pathway describes interdisciplinary recommendations that are designed to be complementary and supportive to the current medical guidelines.

• Recommendations of the 5th Canadian Consensus Conference on the diagnosis and treatment of dementia
• Cognitive Impairment – Recognition, Diagnosis and Management in Primary Care (B.C. Government)

It’s important to mention that phasing and staging of dementia is a mental construct, not a precise science that results in clinical certainty. Progression of disease is a gradual process, and there are no tidy markers or easily distinguished “cut-off points” that develop between one day and the next to differentiate “normal” cognitive function from mild cognitive impairment (MCI) or MCI from early dementia, etc.

It's helpful to view the Phased Dementia Pathway as a continuum that reflects cognitive changes from normal healthy aging through to end-stage dementia.

There is no intention of the Phased Pathway to provide clinicians with rigid linear descriptions of disease progression, but simply a framework for organizing information and knowledge about the various progressive diseases collectively known as dementias.

• UBC Care for EldersInterprofessional Modular Curriculum for Geriatrics
• Hartford Institute for Geriatric Nursing: Dementia Try This Series
• RNAO Caregiving Strategies for Older Adults with Delirium, Dementia and Depression
• Knowledge and Skills Needed for Dementia Care: A Guide for Direct Care Workers (This guide is intended for LTC Care Aides, LPNs, Community Home Support Workers and other frontline providers in various settings)
• Caregivers Count Tool:An On-line Toolkit to help practitioners assess the needs of family caregivers
• Re-Act:Recognize and Report. Act on adult abuse and neglect
• Improving BC’s Care for Persons with Dementia in Emergency Departments and Acute Care

Check out a variety of reliable and valid screening and assessment tools below to assess individuals with cognitive impairment or dementia. If you have not used a particular tool before, use the accompanying scoring and administration guide for the tools provided or speak with your local clinical educator to learn how to use the tool correctly before use.

Understanding the three D’s: Delirium, Depression and Dementia

• Recognizing the 3D’s: compares and contrasts the key features and characteristics of delirium, dementia and depression.
• Screening for Delirium, Dementia and Depression in the Older Adult: Best practices guideline from RNAO to understand and differentiate between the geriatric mental health conditions of Delirium, Dementia and Depression (the "3-D's").

Tools to screen cognition

Standardized Modified Mental State Exam (SMMSE):The Standardized Modified Mental State Exam is the most commonly used test to assess serial cognitive change. On average the MMSE declines 4 points per year in those with AD. It is composed of items assessing orientation, attention, concentration, memory, language and constructional ability. Age, education, cultural background, perceptual and physical abilities can affect performance and it may not detect mild cognitive loss.

• Version For IH Employees

Clock Drawing Tool:The clock drawing test (CDT) is an appropriate supplement to the SMMSE because it draws on a number of cognitive domains such as working memory, executive functioning (planning, conceptualizing), and visuoconstructional skills. It is also less affected by language, culture and education than many other tests.

Montreal Cognitive Assessment Tool (MoCA): The Montreal Cognitive Assessment Tool is a standardized and validated screening tool; useful when clinical data suggests cognitive loss but MMSE scores high (>27), such as in Mild Cognitive Impairment.

• MoCA Instructions Guide (English)

The MoCA website provides multi-lingual copies of the screening test and accompanying instructions guide, including normative data, references and contact support directly to the author, Dr. Z. Nasreddine, if needed.

Mini-Cog: The Mini-Cog is a rapid screening test for Alzheimer's disease that takes only 3 to 5 minutes to administer. Useful in acute care settings, it measures only 2 cognitive domains (short term recall with a clock drawing interloper).  While it is an accurate preliminary screen, it is essential that all positive screens result in further assessment and diagnostic workup. Learn more about the Mini-Cog (article).

Tools to screen for delirium

• Confusion Assessment Method: The CAM is a standardized, validated and reliable screening tool for delirium
• CAM plus PRISME: PRISME provides a quick pocket guide to review protective and causative factors
• CAM Training Manual: Provides instructions and scoring details.
• Assessing and Managing Delirium in the Patient with Dementia: Provides an important algorithm in recognizing that the client's baseline mental status must be taken into account when using clinical screening tools like CAM. A revised version from the Hartford "Try This" series
• Pocket cards for delirium

Tools to screen for depression

• Geriatric Depression Scale (short English version): A brief screening tool for depression, for use in clients with no or very subtle cognitive losses. Tested and reliable in all clinical settings.
• Cornell Assessment Scale for Depression in Dementia (for persons with dementia)

Dementia staging tool

• Global Deterioration Scale: A 7-point scale with clinical descriptions of the progressive cognitive decline of Alzheimer's Disease and Related Dementias (ADRD) – based on the work of Reisberg et al (1992).

Behavioural assessment tools

• BPSD Algorithm
• Dementia Observation System tool
• CMAI assessment (short) tool
• ABC-PIECES model for problem-solving and care planning responsive behaviours
• Pocket cards for BPSD

Caregiver assessment tools

• Modified Caregiver Strain Index and Risk Factor Checklist
• Caregiver Assessment Tool
• Caregiver Discussion Guide

Dementia: Hope through Research (NINDS article)

The following are fully referenced research reviews and evidenced-informed recommendations for education, program planning, and clinical practice:

• Physical, mental and social activities and brain health
• Smoking and brain health
• Alcohol and brain health
• Heart smart = brain smart!

The clinical toolkit for the pre-clinical phase includes client and caregiver teaching materials, practice guidelines for hypertension, diabetes and other chronic disease management tools.

Other resources

• Brain-healthy tips to reduce your risk of dementia (Alzheimer Society of B.C.)

The following three clinical "pinch-points" were identified by persons with MCI and their family members:

• Early recognition of cognitive-related changes
• Clinical and ethical challenges of early diagnosis and disclosure
• Providing client and caregiver support in MCI

The clinical toolkit for Mild Cognitive Impairment includes assessment tools, primary care provider guidelines, useful reading, education and support materials.

Other resources

• Heads up for healthier brains (Alzheimer Society of B.C.)
• Okanagan MCI Algorithm and Resource Pathway: The purpose of this MCI Algorithm is to provide the interdisciplinary team with a simple and comprehensive one‐stop resource access to evidence‐based tools, clinical references and related local services to assist them with the identification, screening, assessment and care planning for their patients/families with and affected by MCI.

We met with early dementia support groups (for people diagnosed with early dementia) and their caregiver support groups and asked these people to tell us their stories about:

• When they first recognized there was a problem
• Their challenges in finding a diagnosis
• Their (mutual) concern about disclosing the diagnosis
• Their bewilderment at what happens next
• How they can best cope with what lay ahead

They described in detail:

• Which aspects of health care and information worked well for them, and what didn't
• Learning to cope, often in the absence of identifiable community supports

Consistently, when they were able to find help through the Alzheimer's Society of British Columbia, their distress was significantly relieved.

Their stories had remarkably good alignment with health-care providers (e.g., community case managers) who described:

• Frustration at not seeing people "early enough"
• The challenges of trying to help persons with dementia
• The challenges with their caregivers for the first time when they hit a crisis (often in the middle stages

In fact, the stories that arose out of early support groups are the "upstream stories" of these nurses’ experiences. They are stories that are not well known but that every health-care provider needs to hear and listen to.

Four "clinical pinch-points" were identified by persons with early phase dementia, their families, caregivers and interdisciplinary health-care providers:

• Supporting Help-Seeking Behaviours: The Pathway from Early Recognition to Diagnosis
• After the Diagnosis: Supporting the Client and Caregiver at Home
• Planning for the Future: The Road Ahead
• When Depression, Delirium and Dementia Co-Exist

The clinical toolkit for the Early Dementia Phase includes assessment tools, learning resources and practice support tools.

Other resources

• First Link (Alzheimer Society of B.C.)
• Advance Care Planning
• Managing the changes in your abilities (Alzheimer Society of B.C.)
• Planning for your future (Alzheimer Society of B.C.)
• By Us For Us Guides (Research Institute for Aging)

The clinical pinch-points of the Middle Phase include:

• Sustainable Caregiving: Maximizing Supports
• The Behaviours and Psychological Symptoms of Dementia (BPSD) – more information below
• Resources for Managing Care of Hospitalized Older Adults with Dementia

Behaviour is not simply a neurobiological symptom of the disease. It is a complex response to the interaction of many variables that include the person’s current cognitive abilities, psychosocial and cultural history, physiological and emotional needs, and physical and social environments.

A lack of understanding about the root causes of dementia behaviours, or simply dismissing it as “part of dementia”, will not result in appropriate intervention.

It is critical that care providers understand the meaning of behaviour, look to identify what triggers it, what risks it poses and to whom, and intervene in a timely and appropriate manner.

The behaviours associated with word dementia have been termed problematic, disturbing, difficult, inappropriate and challenging. This negative terminology that emphasizes the behaviour from the caregiver’s point of view is being replaced with the more neutral and person-centred term responsive behaviours, in recognition that most behaviour is a response to a cue or trigger that the person experiences.

Today, behaviours in dementia are being recognized as a form of communication, rather than random, unpredictable or meaningless events that arise from the disease. It is helpful to view behaviours as the person’s best attempt to respond to their current situation.

When health care providers focus on the individual’s perspective and see behaviour as a form of communication and coping strategy rather than a problem to be managed, a more person-centred approach to care delivery can be achieved.

The evidence indicates that successful management of BPSD requires care providers to understand and accommodate BPSD, not control them.

This means making adjustments in our viewpoint of what lies behind behaviours, our use of language, and using care approaches that are person-centred and tailored to the individual with an emphasis on remaining abilities and strengths.

Other resources

• Behavioural Assessment Tools
  • BPSD Algorithm: Accommodating and managing behaviours in dementia
  • Dementia Observation System (DOS) Tool
  • Cohen Mansfield Agitation Inventory (CMAI)
  • PIECES-ABC Assessment and Care planning Tool
• First line (non-pharmacological) intervention for BPSD
  • BPSD Algorithm
  • Pocket Card
  • U-First Wheel
• Second line (pharmacological) intervention for BPSD
  • BPSD Algorithm
  • Psychotropic template (PIECES)
• Information on BPSD for health professionals: Tough Behavioural Issues
  • Understanding responsive behaviours
  • Restraints
  • Intimacy and sexuality
  • Searching tips for police
• Information on BPSD for persons with Dementia and Families
  • Understanding behaviours
  • Understanding reactive behaviours
  • Understanding repetitive behaviours
  • Delusions and hallucinations
  • Sundowning
  • Intimacy and sexuality
  • Apathy
  • Addressing mealtime challenges for families

The clinical toolkit for the Middle Dementia Phase includes assessment tools, learning resources, caregiver resources and practice support tools.

Assessment tools

Examples of assessment tools suitable for Middle Phase Dementia, delirium and depression may include (but are not limited to):

• Standardized Mini-Mental status examination
• Global Deterioration Scale (GDS)
• Confusion Assessment Method (CAM)
• Cornell Scale for Depression

Additional practice support tools

• Hospitalized older adults with dementia
• Caregiver resource toolkit

Assessing caregivers

• Why assess caregivers?
• Modified caregiver strain index and caregiver risk factor screen
• Caregiver assessment tool
• Caregiver discussion guide
• Geriatric depression scale

Caregiver resources

• What to expect in the middle stages of dementia
• Caring for someone with dementia

Other resources

• Caregivers of Persons with Dementia: Roles, Experiences, Supports and Coping (A Literature Review)
• National Behavioural System Support Project

Late phase care needs are addressed in this portion of the pathway include:

• Preserving personhood (more information below)
• Maintaining quality of life
• End-of-life (palliative) dementia care

Preserving personhood

In the later stages of dementia, the disease is so advanced that people are no longer able to communicate their immediate needs, nor emotionally or socially connect with others.  The ability to communicate in a way that represents ones’ self as a unique individual with defined wants, needs, wishes, preferences, and values become lost. 

Therefore, it becomes essential that those who care for the person in later stages, do so from a respectful and caring place that advocates and represents their lost voice. This is best achieved through using personal knowledge of the individual’s life history to modify and adapt care approaches to support the individual in a way that is consistent with who they are. 

Family members, friends and long-term caregivers play a pivotal and unique role by contributing personal knowledge to better help formal caregivers preserve personhood in late dementia.

Definition of Personhood: "a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being" - Thomas Kitwood, 1997

How to preserve personhood

Two strategies best support personhood in late-stage dementia:

1. Care and attention to language to avoid depersonalizing phrases
2. Using life story information to provide care that is person-centred, consistent and respectful

Respectful language

Language is our unique human gift and our most powerful means of communication.

By consciously using person centred language in a more sensitive manner, we can avoid reducing individuals with Alzheimer’s disease and other dementias to a series of labels, symptoms or medical terms. The Alzheimer Society has developed these language guidelines as a tool for anyone who lives with, supports or cares about a person living with Alzheimer’s disease or another dementia.

Life stories

Life Story books are tools that gather specific personal information about past life stories, important relationships and present and future needs of persons who experience memory loss from conditions such as dementia or a brain injury.  They can be developed at any point in the dementia journey, but their use for care is critical in the later stages of dementia.

• Guide to life story tools
• Life story template
• Using personal information in care
• Tip sheet for students

The clinical toolkit for the Late Dementia Phase includes assessment tools, practice support tools and caregiver resources.

Other Resources

• Caring for persons with dementia at the end of life (Alzheimer Society of B.C.)