Curbside Consultation

Palliative Care in Advanced Dementia

 

Am Fam Physician. 2019 Apr 1;99(7):456-458.

Case Scenario

An 87-year-old patient was brought to my office by her daughter. She has been my patient for 22 years and was diagnosed with Alzheimer disease (AD) eight years ago. Most recent evaluation indicates that she is in stage 6 of the disease; she requires assistance with activities of daily living, has increasing periods of disorientation and aggressiveness, and needs reminding of her name and those of her children. She is currently receiving treatment for advanced heart disease, chronic obstructive pulmonary disease, and multiple myeloma. Her daughter asks about her mother's prognosis and the appropriateness of palliative care. How should determining prognosis and applicability of palliative care for her mother be done? What might be the core management challenges in providing care for her?

Commentary

Dementia is a family of conditions that is the sixth leading cause of death in the United States.1 The term covers several conditions including AD, vascular dementia, and dementia with Lewy bodies. AD is the most prevalent of these conditions and is rapidly increasing in the United States and worldwide. In 2017, more than 5 million Americans were living with AD. By 2025, the number is expected to grow by almost 35% to 7.1 million, with some projections of 16 million by 2050.1 Patients may have symptoms of AD for up to 20 years, although the mean is four to eight years.2

Determining the prognosis for a patient with dementia begins with establishing the current stage of the disease. AD and other dementias are progressive, with seven recognized stages.3  The Global Deterioration Scale is a validated instrument used for determining where the patient is along the progression timeline, and it mirrors the dementia stages (Table 1).3 Stage 1 usually begins when patients are in their 50s or 60s and is commonly not apparent, even to the patient. This stage is characterized by occasional lapses of memory. These lapses become more frequent and perhaps bothersome to the patient in stage 2, although the patient may appear to function normally. The lapses become problematic and may cause the patient increasing anxiety in stage 3. At this stage, family members and others start to notice the symptoms and effects of dementia. Memory and functional impairment proceed inexorably through the subsequent stages. By stage 7, the patient has incontinence, severe functional loss requiring assistance for activities of daily living, limited speech, and total disorientation. Median survival in stage 7 is 1.3 years. Most patients with advanced dementia spend a disproportionate amount of time (40%) in the most severe (stage 7) stage, often requiring placement in a skilled nursing facility, where two-thirds of these patients die. More than 80% of patients in stage 7 have notable difficulty eating, often requiring assistance; weight loss is common. Infections, primarily pneumonia and urinary tract infections, are common and carry a 40% or higher risk of mortality.4

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TABLE 1

Global Deterioration Scale

StagesCharacterizations

1

Appears normal and can cover up lapses

2

Forgets certain things, but otherwise appears normal

3

Difficulties at work

Becomes anxious

Family becomes aware

4

Reduced ability to count

Finds travel difficult

Can no longer manage own affairs

5

Needs help getting dressed and with other activities of daily living

6

Needs help eating

Needs help with toilet

May be incontinent

Disoriented to time and place

Forgets who others are

7

Severe speech loss

Forgets who he or she is

Motor stiffness

Incontinence

Needs feeding

Total disorientation


Information from reference 3.

TABLE 1

Global Deterioration Scale

StagesCharacterizations

1

Appears normal and can cover up lapses

2

Forgets certain things, but otherwise appears normal

3

Difficulties at work

Becomes anxious

Family becomes aware

4

Reduced ability to count

Finds travel difficult

Can no longer manage own affairs

5

Needs help getting dressed and with other activities of daily living

6

Needs help eating

Needs help with toilet

May be incontinent

Disoriented to time and place

Forgets who others are

7

Severe speech loss

Forgets who he or she is

Motor stiffness

Incontinence

Needs feeding

Total disorientation


Information from reference 3.

Estimating the prognosis in advanced dementia is problematic because of patients' fluctuating physical and mental status and the complex interaction of health, sociodemographic factors, and cognitive function. Two tools are available to help understand a patient's progression through AD dementia. The Advanced Dementia Prognostic Tool (ADEPT) predicts survival based on 11 variables in demographics, cognitive status, functional status, and active diagnoses.5,6 A risk score greater than 16 (on a scale of 1 to 32) suggests a six-month probability of dying at greater than 50%. Alternatively, Medicare hospice guideline criteria can be used to assess prognosis. If a patient meets Medicare hospice criteria, it is anticipated

Address correspondence to Scott Endsley, MD, at Scott.endsleyMD@gmail.com. Reprints are not available from the authors.

Author disclosure: No relevant financial affiliations.

References

show all references

1. Alzheimer's Association. 2017 Alzheimer's disease facts and figures. https://www.alz.org/media/HomeOffice/Facts%20and%20Figures/facts-and-figures.pdf. Accessed January 14, 2019....

2. Tejada-Vera B. Mortality from Alzheimer's disease in the United States: data for 2000 and 2010. NCHS Data Brief. 2013;116:1–8.

3. Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982;139(9):1136–1139.

4. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529–1538.

5. Mitchell SL, Miller SC, Teno JM, Davis RB, Shaffer ML. The advanced dementia prognostic tool: a risk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manage. 2010;40(5):639–651.

6. Mitchell SL, Miller SC, Teno JM, et al. Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA. 2010;304(17):1929–1935.

7. Reisberg B. Functional assessment staging (FAST). Psychopharmacology Bull. 1988;24(4):653–659.

8. Merel SE, DeMers S, Vig E. Palliative care in advanced dementia [published correction appears in Clin Geriatr Med. 2014;30(4):xiii]. Clin Geriatr Med. 2014;30(3):469–492.

9. Buss MK, Rock LK, McCarthy EP. Understanding palliative care and hospice: a review for primary care providers [published correction appears in Mayo Clin Proc. 2017;92(5):853]. Mayo Clin Proc. 2017;92(2):280–286.

10. Quill TE, Abernathy AP. Generalist plus specialist palliative care— creating a more sustainable model. N Engl J Med. 2013;368(13):1173–1175.

11. Tunzi M. Can the patient decide? Evaluating patient capacity in practice. Am Fam Physician. 2001:64(2):299–306.

12. Hanson LC, Zimmerman S, Song MK, et al. Effect of the goals of care intervention for advanced dementia: a randomized clinical trial. JAMA Intern Med. 2017;177(1):24–31.

13. Achterberg WP, Pieper MJ, van Dalen-Kok AH, et al. Pain management in patients with dementia. Clin Interv Aging. 2013;8:1471–1482.

14. Institute for Healthcare Improvement. Your conversation starter kit: for families and loved ones of people with Alzheimer's disease or other forms of dementia. https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-StarterKit-Alzheimers-English.pdf. Accessed December 20, 2018.

15. Advance Directive for Dementia. Health Directive for Dementia. https://bit.ly/2naq3Hi. Accessed December 20, 2018.

16. Lichtner V, Dowding D, Esterhuizen P, et al. Pain assessment for people with dementia: a systematic review of systematic reviews of pain assessment tools. BMC Geriatr. 2014;14:138.

17. American Medical Directors Association. Pain Assessment in Advanced Dementia (PAINAD) scale. Updated July 28, 2004. http://geriatrictoolkit.missouri.edu/cog/painad.pdf. Accessed December 20, 2018.

18. Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAIDAD) scale. J Am Med Dir Assoc. 2003;4(1):9–15.

19. Husebo BS, Ballard C, Sandvik R, Nilsen OB, Aarsland D. Efficacy of treating pain to reduce behavioral disturbances in residents of nursing homes with dementia: cluster randomised clinical trial. BMJ. 2011;343:d4065.

Case scenarios are written to express typical situations that family physicians may encounter; authors remain anonymous.

This series is coordinated by Caroline Wellbery, MD, Associate Deputy Editor.

A collection of Curbside Consultation published in AFP is available at https://www.aafp.org/afp/curbside.

Please send scenarios to Caroline Wellbery, MD, at afpjournal@aafp.org. Materials are edited to retain confidentiality.

 

 

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