Edith Cowan University

A Palliative Approach for People who have Dementia Presenter: Associate Professor Chris Toye

Acknowledgments The Guidelines for a Palliative Approach in Residential Aged Care1 & The Australian Pain Society’s Pain in Residential Aged Care: Management Strategies2 both underpin this presentation to some degree Funding for these was from the Commonwealth Department of Health and Ageing

What is a palliative approach? Plan for the Session What is a palliative approach? How can components of a palliative approach enhance the care or support of people with dementia and their families? & How can we move forward to obtain the best possible outcomes from using a palliative approach in this area?

When dementia is manifested, there is “an interplay between two tendencies … a neurological impairment, which [sets] the upper limits to how a person can perform. The second is the personal psychology …. together with the social psychology3” In most dementias, the neurological impairment is due to progressive disease

Dame Cicely Saunders opened St Christopher’s Hospice in 1967 Dame Cicely Saunders opened St Christopher’s Hospice in 1967. “You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die.” – Dame Cicely Saunders Photo and quote taken from the website of the National Hospice and Palliative Care Organisation in the US

Palliative care has tended to be equated with cancer care and “near death” care but the focus has shifted.

A Palliative Approach is not1 Only relevant to end stage illness It is an active approach to reducing any kind of symptoms and distress at any point in the trajectory. Only relevant to cancer patients A palliative approach should be tailored to meet individuals’ needs.

A Palliative Approach aims to1: improve QOL for people with life limiting illness or who are approaching death because of advanced age affirm life and support active living for as long as possible & support the family

A palliative approach may be: Relevant over a long period of time Concurrent with active treatments that enhance comfort and/or quality of life Implemented by those other than palliative care specialists in many instances

General Trajectories of Function and Well-being Over Time in Eventually Fatal Chronic Illnesses4 [Help with image viewing]                                                                                                                                                                                                                                                                                      

A Palliative Approach involves: early identification, assessment, and treatment of: pain and other physical symptoms & cultural, psychological, social, and spiritual needs. It acknowledges feelings of loss & grief

A Palliative Approach also involves a multi-disciplinary focus & collaboration and information sharing with the person and their family

Finally, a palliative approach: Supports planning for the future Regards dying as a normal process Intends neither to hasten nor delay death

How can the components of a palliative approach enhance the care or support of people with dementia and their families?

Components Advance care planning* Promoting dignity and quality of life Providing psychosocial & spiritual care Promoting comfort* Maintaining nutrition and hydration in appropriate ways Promoting family support Providing end of life care

Advance care planning Having dementia is likely to mean experiencing progressive dependence on others for care simultaneously with a decline in the ability to communicate

But positive things are occurring Early diagnosis is occurring more often The use of pharmacological therapies can sometimes delay cognitive symptoms There is research into the use of physical and cognitive exercise as possible treatments to delay progression Increasingly, there is public recognition of dementia, its causes, and its effects5 Also, in Australia, we have increased care options for people who have dementia

More and better options exist than previously for people who have dementia Also, potentially people who have dementia have more opportunities than before to indicate to others, in advance, their care preferences

There is now considerable scope for empowerment in advance care planning When? In a study of 51 people with mild/moderate cognitive impairment (MMSE6 scores 13-26), participants responded consistently to questions about care preferences and choices7.

In a study of 20 people with mild to moderate dementia (MMSE 13-27)8 : participants had taken part in recent health care decision making processes, made choices, & provided reasons for them BUT

In a study of 21 people with early dementia who commented on health choices recently made about home help, attending a day centre, or moving into residential care9: 4/21 felt well informed about their options 6/21 said they had been able to fully express their views 1/21 reported having had adequate time for reflection 12/21 indicated that the decision would be difficult or impossible to reverse their decision

Also, Nair and associates (2000) determined that just 0 Also, Nair and associates (2000) determined that just 0.2% of nursing home residents in this country had advance care plans10

Why? The wishes of the person with dementia about future care are sometimes unknown to the family member11, this may be because diagnosis is problematic, avoided, or denied until late in the trajectory12 and discussion does not occur Family carers don’t know what is expected of them and need much more support than is provided13 One outcome is that decisions, such as that to seek a residential placement, tend to be deferred until a crisis eventuates, and are associated with feelings such as guilt, failure, and grief14, 15

Relevant evidence based guidelines1 The use of aggressive medical treatment of infections is not recommended for residents with advanced dementia. Instead, a palliative approach is recommended for the resident’s comfort, which might include short-term antibiotic therapy to improve symptoms and improve quality of life. Remaining in familiar surroundings is beneficial for residents with advanced dementia as this helps maintain their palliative care plans and promotes feelings of orientation and security

implementation is limited In summary: the potential to include the perspective of people with mild to moderate dementia exists But implementation is limited

How can we move forward?

Chronic pain becomes more common in older adults Promoting (physical) comfort2 Chronic pain becomes more common in older adults Dementia becomes more common in older adults Therefore older adults with dementia are quite likely to have chronic pain

Example - Osteoarthritis16 (OA) Prevalence increases with age Radiographic changes indicating the presence of OA 80%+ of those aged 55+ Prevalence of symptomatic disease has been reported to be 58% - 68% for 65+ Symptomatic disease is a leading cause of pain and disability in older adults

OA & Disability Hands: dexterity Knees: walking & climbing Hips: walking, moving, bending Spine: neck & lower back movement &/or weakness or numbness of arms or legs Pain can be expected to be present in each scenario. Pain is especially linked with movement.

Pain “Pain is an unpleasant sensory and emotional experience ... derived from complex physiological processes…. The most accurate and reliable evidence for the existence and intensity of pain is the patient’s description1”(p.207) People who have dementia become less able to report pain Note: Hearing deficits also become more prevalent with age

A cascade of effects occurs if pain is not well managed that may include: Reduced mobility ……. Social isolation ….. Insomnia ……. Reduced appetite ……. Lack of concentration ……..

What can be done for the person who has dementia? Systematic procedures need implementing for diagnosis, assessment, & management of pain

The history Being able to access an accurate health history is essential to diagnose pain & therefore to plan effective treatment. Attending to this history when assessing pain is also imperative Multiple pain sites are likely

Three useful histories aiding diagnosis (family help): 1. An accurate record of previous & present injury and illnesses/disease processes that may be linked with current acute or chronic pain 2. An accurate pain history showing reported pain characteristics: Location, intensity, type*, what makes it worse, what helps, what behaviours are thought to have been indicators of pain 3. Analgesics and alternative treatments used to date, how effective, any side effects manifested

Main Types of Pain1 -related to cause/treatment NOCICEPTIVE (stimulation of pain receptors, tissue injury, inflammation, deformity) Somatic Pain Well localized Deep (musculo-skeletal) - dull pain or ache. [non-opioid, opioid, NSAIDs CBT, heat, exercise (as app)] Superficial (skin, mucosa, upper GIT, anus pain) sharper & may burn [non-opioid, opioid, NSAIDs, CBT, heat, topical preps] Visceral Pain From visceral changes eg from GI tract – not well localised & can radiate – squeezing, pressure [non-opioid, opioid, NSAIDs, anti spasmodics, CBT, exercise]

NEUROPATHIC (central or peripheral NS damage) Includes diabetic neuropathy, post herpetic neuralgia, phantom limb Shooting, burning, tingling, numbness [Adjuvants- antideps, anti cons, anti arrythmics, topical preps] Hyperalgesia, allodynia Sympathetic involvement (eg, dec skin blood flow)

Assessment

Assessment Location In a study including people with Mini Mental State Examination scores from 6-30, all were able to provide recordable results on a pain map by pointing (Weiner et al., 1998, cited in Ferrell et al.17)

Intensity Uni-dimensional scales are as reliable for those with mild-mod cognitive impairment as they are for those without cognitive impairment Hurley et al., 1992, cited in Ferrell et al.17) Observational scales may underestimate pain & their use needs to be supported by education that enhances awareness of more subtle signs of pain

Some self report tools provide an indication of how pain impacts on function and can sometimes be answered by people with dementia Assessment on movement is critical

Suggestion (from SCGH) An observational pain assessment may be useful in a patient with confusion/dementia. If pain is indicated but not certain: Rule out physical stressors eg incontinence, cold, hunger, position change, stimulation. If no change in one hour, conduct a detailed physical assessment eg look for infection, arthritis etc (past/present). Try a non-pharmacological approach. If no change, try analgesia and re-assess.

The choices For older adults – start low & go slow Observe for side effects & interactions World Health Organisation, 2006 Use of medications plus non pharmacological strategies Analgesic Ladder The World Health Organization (WHO) has produced an analgesic ladder to be used as a guide for prescribing analgesics. If a patient does not experience pain relief on one step of the analgesic ladder, they should progress to the next step. Oral analgesic drugs are usually the first line treatment for treating pain. The choice of analgesic should be based on the severity of the pain rather than the stage of the patient's disease. Analgesics should be taken regularly and the dose gradually increased, as necessary. Step One The first step of the analgesic ladder is to use a non-opioid analgesic, for example paracetamol. Adjuvant drugs to enhance analgesic efficacy, treat concurrent symptoms that exacerbate pain, and provide independent analgesic activity for specific types of pain may be used at any step NB NSAIDS can be risky for older adults Step Two If the pain is persisting or worsening despite step one then a mild opioid such as codeine should be added (not substituted). Step Three When higher doses of opioid are necessary, the third step is used. At this step an opioid for moderate to severe pain is used, eg morphine. The dose of the stronger opioid can then be titrated upwards, according to the patient's pain as there is no ceiling dose for morphine. Mention pain wind up

Principles of management Medications for persistent pain should regular basis and break-through pain should also be treated. Incident pain can be predicted and prevented using prn analgesia Use the least invasive but effective route Multimodal approaches guided by the pain diagnosis are often most effective (eg meds plus heat - somatic)

Summary How likely is pain in people who have dementia? Chronic pain is a likely scenario and is difficult to assess. Acute pain is also easy to miss. Where to start – history taking and its clear and accessible documentation underpin good pain assessment What to look for – we need to use the history, knowledge of likely symptoms, plus observation and communication skills & to be aware of possible psychological issues. How to assess – use the most appropriate tool for the person and situation but don’t negate ongoing observation – remember to include assessing on movement How to treat – use pain diagnosis to suggest the right treatments (often multi-modal) & reassess to establish its effectiveness.

How can we move forward?

Some final thoughts People with dementia and their families have special needs for care and support. Therefore, the palliative approach for these people needs tailored to meet their needs

Guideline1 A palliative approach benefits the family as well as the resident, particularly when it incorporates continual follow up evaluation, attention to distressing symptoms and avoidance of hospitalisation, and emphasises and promotes the resident’s quality of life and dignity.

The extended family Members of the aged care team can experience loss following the deaths of residents with whom they have established meaningful relationships. Therefore, they may require opportunities to formally acknowledge their loss and access to adequate bereavement support… Guideline

Thank You

References 1. Australian Government Department of Health and Ageing (2004). Guidelines for a palliative approach in residential aged care. Rural Health and Palliative Care Branch, Australian Government Department of Health and Ageing Canberra. 2. The Australian Pain Society. (2005). Pain in Residential Care Facilities: Management Strategies. North Sydney, NSW: Author. 3. Kitwood, T., & Bredin, K. (1992). Towards a theory of dementia care: Personhood and well-being. Aging and Society, 12, 269-287. 4. Lynn, J. (2001). Perspectives on care at the close of life. JAMA, 285 (7), 925-932. 5. Penrod, J.,  Yu, F.,  Kolanowski, A.,  Fick, D.M.,  Loeb, S.J., & Hupcey, J.E. (2007). Reframing person-centered nursing care for persons with dementia. Research and Theory for Nursing Practice: An International Journal, 21 (1), 57-72. 6. Folstein, M., Folstein, S., McHugh, P. (1975). "Mini-mental state'. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3, 189-198

7. Feinberg, L. F. , & Whitlatch, C. J. (2001) 7. Feinberg, L. F., & Whitlatch, C. J. (2001). Are persons with cognitive impairment able to state consistent choices? The Gerontologist, 41 (3), 374-382. 8. Horton-Deutsch, S., Twigg, P., & Evans, R. (2007). Health care decision-making of persons with dementia. Dementia, 6 (1), 105-120. 9. Tyrrell, J., Genin, N., & Myslinski, M. (2006). Freedom of choice and decision-making in health and social care: Views of older patients with early-stage dementia and their carers. Dementia, 5 (4), 479-502. 10. Caplan, G. A., Meller, A., Squires, B., Chan, S., & Willett, W. (2006). Advance care planning and hospital in the nursing home. Age and Ageing, 35, 581-585. 11. Rurrup, M. L., Onwuteaka-Philipsen, B. D., Pasman, H. R. W., Ribbe, M. W., & van der Wal, G.(2006). Attitudes of physicians, nurses and relatives towards end-of life-decisions concerning nursing home patients with dementia. Patient Education & Counselling, 61, 373-380.

12. Toller, C. A. S., (2006). Compliance with and understanding of advance directives among trainee doctors in the United Kingdom. Journal of Palliative Care, 22 (3), 141-146. 13. Hirschman, K. B., Kapo, J. M., & Karlawish, J. H. T. (2006). Why doesn’t a family member of a person with advanced dementia use a substituted judgement when making a decision for that person. Journal of Geriatric Psychiatry, 14 (8), 659-667. 14. Boustani, M., Perkins, A. J., Fox, C., et al. (2006). Who refuses the diagnostic assessment for dementia in primary care? International Journal of Geriatric Psychiatry, 21, 556-563. 15. Caron, C. D., Griffith, J., & Arcand, M. (2005). End of life decision making in dementia: The perspective of family caregivers. Dementia, 4 (1), 113-136. 16. Burke, M. M., & Laramie, J. A. (2000). Primary care of the older adult: A Multidisciplinary approach. St Louis, PA: Mosby. 17. Ferrell, B. A., Whiteman, J. E., & Capello, C. (2003). Pain. In R. S. Morrison & D. E. Meier (Eds.) Geriatric Palliative Care. Oxford, UK: Oxford University Press