Meeting the Communication and Care Planning Needs of Patients and Caregivers Affected by Dementia from the Time of Diagnosis

Manly JJ , Jones RN , Langa KM , et al. Estimating the prevalence of dementia and mild cognitive impairment in the US: The 2016 health and retirement study harmonized cognitive assessment protocol project. JAMA Neurol, 2022; 79(12):1242–1249; doi: 10.1001/jamaneurol.2022.3543

van Dyck CH , Swanson CJ , Aisen P , et al. Lecanemab in early Alzheimer’s disease. N Engl J Med, 2023; 388(1):9–21; doi: 10.1056/NEJMoa2212948

McDade E , Cummings JL , Dhadda S , et al. Lecanemab in patients with early Alzheimer’s disease: Detailed results on biomarker, cognitive, and clinical effects from the randomized and open-label extension of the phase 2 proof-of-concept study. Alzheimers Res Ther, 2022; 14(1):191; doi: 10.1186/s13195-022-01124-2

Medicare introduces GUIDE model of dementia care delivery. Alzheimers Dement, 2023; 19(9):4287–4289; doi: 10.1002/alz.13465

Ramesh T , Kadakia K , Moura L . Transforming value-based dementia care-implications for the GUIDE Model. JAMA Intern Med, 2024; 184(3):237–239; doi: 10.1001/jamainternmed.2023.7669

United States Department of Health and Human Services. National Plan to Address Alzheimer’s Disease. 2023. Available from: https://aspe.hhs.gov/sites/default/files/documents/48806aa427da7872bcd408e5cd4afe64/napa-2023-public-member-recommendations.pdf [Last accessed: November 30, 2023].

Dubois B , Padovani A , Scheltens P , et al. Timely diagnosis for alzheimer’s disease: A literature review on benefits and challenges. J Alzheimers Dis, 2016; 49(3):617–631; doi: 10.3233/JAD-150692

Shafir A , Ritchie CS , Garrett SB , et al. “Captive by the uncertainty”—experiences with anticipatory guidance for people living with dementia and their caregivers at a specialty dementia clinic. J Alzheimers Dis, 2022; 86(2):787–800; doi: 10.3233/JAD-215203

Samsi K , Abley C , Campbell S , et al. Negotiating a labyrinth: Experiences of assessment and diagnostic journey in cognitive impairment and dementia. Int J Geriatr Psychiatry, 2014; 29(1):58–67; doi: 10.1002/gps.3969

Blinka MD , Gundavarpu S , Baker D , et al. “At least we finally found out what it was”: Dementia diagnosis in minoritized populations. J Am Geriatr Soc, 2023; 71(6):1952–1962; doi: 10.1111/jgs.18329

Aminzadeh F , Byszewski A , Molnar FJ , et al. Emotional impact of dementia diagnosis: Exploring persons with dementia and caregivers’ perspectives. Aging Ment Health, 2007; 11(3):281–290; doi: 10.1080/13607860600963695

Yates J , Stanyon M , Samra R , et al. Challenges in disclosing and receiving a diagnosis of dementia: A systematic review of practice from the perspectives of people with dementia, carers, and healthcare professionals. Int Psychogeriatr, 2021; 33(11):1161–1192; doi: 10.1017/S1041610221000119

Sideman AB , Gilissen J , Harrison KL , et al. Caregiver experiences navigating the diagnostic journey in a rapidly progressing dementia. J Geriatr Psychiatry Neurol, 2023; 36(4):282–294; doi: 10.1177/08919887221135552

Wollney EN , Armstrong MJ , Bedenfield N , et al. Barriers and best practices in disclosing a dementia diagnosis: A clinician interview study. Health Serv Insights, 2022; 15:11786329221141829; doi: 10.1177/11786329221141829

Hendriksen HMA , van Gils AM , van Harten AC , et al. Communication about diagnosis, prognosis, and prevention in the memory clinic: Perspectives of European memory clinic professionals. Alzheimers Res Ther, 2023; 15(1):131; doi: 10.1186/s13195-023-01276-9

Lewis SL , Józefowicz RF , Kilgore S , et al. Introducing the neurology milestones. J Grad Med Educ, 2014; 6(1 Suppl 1):102–104; doi: 10.4300/JGME-06-01s1-34

Rizk H , Agrawal Y , Barthel S , et al. Quality improvement in neurology: Neurotology quality measurement set. Otolaryngol Head Neck Surg, 2018; 159(4):603–607; doi: 10.1177/0194599818790947

Creutzfeldt CJ , Kluger B , Kelly AG , et al. Neuropalliative care: Priorities to move the field forward. Neurology, 2018; 91(5):217–226; doi: 10.1212/WNL.0000000000005916

Armstrong MJ , Bedenfield N , Rosselli M , et al. Best practices for communicating a diagnosis of dementia: results of a multi-stakeholder modified delphi consensus process. Neurol Clin Pract, 2024; 14(1):e200223; doi: 10.1212/CPJ.0000000000200223

Weisbrod N . Primary palliative care in dementia. Neurotherapeutics, 2022; 19(1):143–151; doi: 10.1007/s13311-021-01171-x

Mehta AK , Najjar S , May N , et al. A needs assessment of palliative care education among the United States Adult Neurology Residency Programs. J Palliat Med, 2018; 21(10):1448–1457; doi: 10.1089/jpm.2018.0191

Bernstein Sideman A , Harrison KL , Garrett SB , et al. Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: Specialty memory care provider perspectives. Alzheimers Dement (N Y), 2021; 7(1):e12144; doi: 10.1002/trc2.12144

Mansfield E , Noble N , Sanson-Fisher R , et al. Primary care physicians’ perceived barriers to optimal dementia care: A systematic review. Gerontologist, 2019; 59(6):e697–e708; doi: 10.1093/geront/gny067

Morgan E , De Lima B , Aleksandrova T , et al. Overcoming barriers to early dementia diagnosis and management in primary care. J Gen Intern Med, 2021; 36(8):2486–2487; doi: 10.1007/s11606-020-05967-z

Portacolone E , Covinsky KE , Johnson JK , et al. Expectations and concerns of older adults with cognitive impairment about their relationship with medical providers: A call for therapeutic alliances. Qual Health Res, 2020; 30(10):1584–1595; doi: 10.1177/1049732320925796

McKenzie EL , Brown PM . “Just see the person who is still a person (…) they still have feelings”: Qualitative description of the skills required to establish therapeutic alliance with patients with a diagnosis of dementia. Int J Ment Health Nurs, 2021; 30(1):274–285; doi: 10.1111/inm.12782

Sagbakken M , Spilker RS , Nielsen TR . Dementia and immigrant groups: A qualitative study of challenges related to identifying, assessing, and diagnosing dementia. BMC Health Serv Res, 2018; 18(1):910; doi: 10.1186/s12913-018-3720-7

Poyser CA , Tickle A . Exploring the experience of the disclosure of a dementia diagnosis from a clinician, patient and carer perspective: A systematic review and Meta-ethnographic synthesis. Aging Ment Health, 2019; 23(12):1605–1615; doi: 10.1080/13607863.2018.1506747

Palazzo L , Hsu C , Barnes DE , et al. Patient and caregiver perspectives on a tool to increase recognition of undiagnosed dementia: A qualitative study. BMC Geriatr, 2021; 21(1):604; doi: 10.1186/s12877-021-02523-0

Dooley J , Bailey C , McCabe R . Communication in healthcare interactions in dementia: A systematic review of observational studies. Int Psychogeriatr, 2015; 27(8):1277–1300; doi: 10.1017/S1041610214002890

Shalev D , Robbins-Welty G , Ekwebelem M , et al. Mental health integration and delivery in the hospice and palliative medicine setting: A national survey of clinicians. J Pain Symptom Manage, 2024; 67(1):77–87; doi: 10.1016/j.jpainsymman.2023.09.025

Revised Criteria for Diagnosis and Staging of Alzheimer’s Disease: Alzheimer’s Association Workgroup. Available from: https://aaic.alz.org/diagnostic-criteria.asp [Last accessed: December 27, 2023].

Tetrault A , Nyback M-H , Vaartio-Rajalin H , et al. Advance care planning in dementia care: Wants, beliefs, and insight. Nurs Ethics, 2022; 29(3):696–708; doi: 10.1177/09697330211035498

Harrison KL , Ritchie CS , Patel K , et al. Care settings and clinical characteristics of older adults with moderately severe dementia. J Am Geriatr Soc, 2019; 67(9):1907–1912; doi: 10.1111/jgs.16054

Mo M , Zacarias-Pons L , Hoang MT , et al. Psychiatric disorders before and after dementia diagnosis. JAMA Netw Open, 2023; 6(10):e2338080; doi: 10.1001/jamanetworkopen.2023.38080

Robinson MT , Holloway RG . Palliative care in neurology. Mayo Clin Proc, 2017; 92(10):1592–1601; doi: 10.1016/j.mayocp.2017.08.003

Flaherty E , Bartels SJ . Addressing the community-based geriatric healthcare workforce shortage by leveraging the potential of Interprofessional Teams. J Am Geriatr Soc, 2019; 67(S2):S400–S408; doi: 10.1111/jgs.15924

Lupu D , American Academy of Hospice and Palliative Medicine Workforce Task Force. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage, 2010; 40(6):899–911; doi: 10.1016/j.jpainsymman.2010.07.004