Alzheimer Society of Manitoba - Dementia Care & Brain Health - · PDF file...

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Transcript of Alzheimer Society of Manitoba - Dementia Care & Brain Health - · PDF file...

  • Daryl Dyck RN MN Clinical Nurse Specialist, WRHA Home Care

    Janice Nesbitt RN MN Clinical Nurse Specialist, WRHA Palliative Care

    Alzheimer Conference March 2, 2020

  •  Faculty:

     WRHA Home Care Program – CNS

     WRHA Palliative Care – CNS

     Relationships with commercial interests:

    ◦ Not Applicable

  • None

    Potential for conflict(s) of interest: Not Applicable

  • Review :

    1) The Brain and Dementia

    2) End of Life care in community settings

     Long Term Care / Home Care

    3) Palliative care

    4) Communication - goals of care

  • 1) What common burdensome interventions should not be considered at End of life in LTC ?

    A) Tube feeding

    B) Artificial ventilation

    C) Cardiac surgery

  • 2) What not to discuss when dealing with a loved one’s chronic illness ?

    A) Illness trajectory

    B) Advanced Care Planning

    C) Dinner plans

  • 3) How to prepare family/friends to be realistic about a resident’s condition when they visit?

    A) Talk to family prior to their visit

    B) Ask the physician to speak with the family

    C) Let the family have a ‘go’

  • The Brain and Dementia

  • Personality

    Interpreting

    visual Memory, speech, hearing

    Cerebellum

    Coordination

    Planning

  • Dementia

    Vascular

    Alzheimer’s

    Korsakoff’s

    Parkinson’s Pick’s

    Huntington's

    Lewy body

  • Metastatic Lung

    Cancer

    ~ 1 year

    Metastatic Breast

    Cancer

    ~ 2-4 years

    Metastatic Colon

    Cancer

    ~ 1-2 years

    Pancreatic Cancer

    ~ 6 months

    Multiple organ

    failure

    < 2 years

    Alzheimer's

    Disease

    ~ 4-8 years

  • Trajectories of Disability in the Last Year of Life among 383 Decedents.

  •  Among 323 PCH residents near Boston with advanced dementia followed for 18 months: ◦ 55% died (25% within 6 months)

    ◦ 41% had pneumonia

    ◦ 86% had a feeding problem

     Chance of surviving 6 months: ◦ After episode pneumonia ~ 50%

    ◦ With feeding/swallowing problem ~ 60%

     Burdensome Interventions (hospital, tube feed): ◦ Decreased last 3 months in caregiver group who

    understood poor prognosis in advanced dementia Mitchell et al. N Engl J Med 2009;

    361:1529-1538

  •  High prevalence of distressing symptoms: ◦ Dyspnea > 5 days – 46%

    ◦ Pain 39%

    ◦ Ulcers 39%

    ◦ Agitation 54- 90%

    Mitchell et al. N Engl J Med 2009; 361:1529-1538

  • Manitoba (2016):

     Nearly half of deaths occurred in hospital

    ◦ not just AD

     30% in a LTC facility

    ◦ 10,000 beds in Manitoba (~ 7000 with dementia)

    ◦ Life expectancy following admission: ~ 2 years

    ◦ Death rate 1/3 of residents per year.

     20% at Home

  • Home Care-- long stay Home Care Assessed Clients – 2017-18 WRHA

    Health condition Community

    Total* N

    Community Total*

    %

    Heart/circulation diseases

    Cerebrovascular accident (stroke) 1907 16.2

    Congestive heart failure 1447 12.3

    Coronary artery disease 1671 14.2

    Hypertension 7120 60.5

    Neurological diseases

    Alzheimer’s disease and other dementia 2205 18.7

    Psychiatric/mood diseases

    Any psychiatric diagnosis 2654 22.5

    Other diseases

    Diabetes 2948 25.0

    Emphysema/COPD/asthma 2154 18.3

    Number of assessed clients 11,776

  • 2015-2016 CIHI Report:

    Few seniors with dementia receive palliative care and end-of-life services, despite having higher mortality than other seniors.

    Reasons for the lack of palliative care may include:

    • Difficulties assessing needs and making a prognosis regarding

    time to death.

    • Limited access to palliative care in rural and remote

    communities

    • Dementia in particular not being seen as a palliative care issue

    by families, patients and some health care practitioners

  •  36 PCH (residents/staff) from AB, MB, and SK.

     Burdensome symptoms (incontinence, responsive behaviours) and care practices. Chemical and physical restraints near end of life is highly prevalent.

    ◦ Key: Understanding and addressing burdensome symptoms and inappropriate care practices is a significant step toward improving the quality of living for these individuals

    Hoben, M, et al., 2016

  •  12 month study 3 Nursing Homes in Ontario; interview residents (>85 years), staff and family.

     Study Aim: Identify the influences of long term care cultural beliefs on initiation of a palliative care

    ◦ Strong belief that living and dying are on 2 different planes – not occurring at the same time. Talking about dying typically 1- 2 days prior to death. Because LTC is for the living – end of life care initiated at the last moments of life.

    Cable-Williams and Wilson, 2016

  •  19 focus groups and 117 participants (staff, residents & their families)

     Study Aim: Explore how palliative care in LTC addresses caring for the living and dying.

     Findings:

     End-of-life comfort to those who were actively dying.

     Suggest eliciting residents’ perceptions of end-of- life comfort, and ensuring that residents, families, and staff can participate in providing comfort care to dying residents could support expanded integration of palliative principles.

    Sussman et al., 2017

  •  Study Aim: Describe communication, content and process related to End of life communication

     Overarching theme – “missed conversations” EOL care /preferences rarely talked about; information not relayed

    ◦ “No one asked” - Preference conveyed informally, but no systematic process

    ◦ “They know me and my needs” – Assumptions about end of life and goals of care

    ◦ Lack of conveying information or wishes

    ◦ “Not my job.”

    Towsley, G, et al., 2015 J. Palliative Med;

  •  provides relief from pain and other distressing symptoms;

     affirms life and regards dying as a normal process;

     intends neither to hasten or postpone death;

     integrates the psychological and spiritual aspects of patient care;

     offers a support system to help the family cope during the patients illness and in their own bereavement;

     uses a team approach

     enhances quality of life

     is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

    WHO, 2019

  • Volunteers

    Allied Health

    Spiritual Care

    Friends and Family

    HC Professionals

    Person and Family

  •  Palliative care does not need to be exclusive of ongoing medical intervention

     Can be involved as a parallel process, with a variable profile depending on goals of care and clinical circumstances

    Individual does not need to be ACP -C

    D E A T H

    Follow- up

  • Varied Trajectories

    Sudden, immediate death

    Variable trajectory–

    potential for anticipating and

    addressing “threats to comfort”

    Progressive illness

    • cancer

    • neurodegenerative illness

    • end-stage organ failure

    Acute Event

    • severe brain injury (CVA, anoxia, trauma)

    • sepsis

    • inoperable surgical conditions

    • bedridden

    • weak, swallowing impaired, poor airway protection, can’t

    clear secretions; pneumonia – dyspnea, congestion

    • delirium – agitation

    Final common pathway

  •  CPR – rarely successful in advanced dementia

    ◦ Most residents do not have ACP-R

     Dialysis – median 1 year survival 26-42%

    ◦ Most have decline in ADLs, cognition after start

     Opioids

    ◦ Not required by all persons

    ◦ Dying itself not a painful

  • Symptoms at End of Life

    Symptom Cancer Heart Lung Kidney A.D.

    Pain 66 % 60 % 55 % 50 % ??

    Confusion 50 % 50 % 25 % 25 % 100 %

    Fatigue 60 % 75 % 75 % 80 % ??

    Short of Breath

    40 % 75 % 90 % 35 % ??

    No Appetite 60 % 30 % 50 % 40 % ??

    (Journal of Pain and Symptom Management, 2006)

  • Total

    Suffering

    Pain

    Physical

    Symptoms

    Psychological

    Social

    Cultural

    Spiritual

    Total Suffering

    Woodruff Adapted from Pallium Pain module

  • Regardless of setting…

  •  Often issues arise around intensity of care in the weeks and months prior to death:

    ◦ Do we treat the next pneumonia?

    ◦ Do we send them to the hospital?

    ◦ What do we