In China the population over the age of 60, in which Alzheimer's disease becomes more prevalent, is estimated to grow from 12% in 2010 to 33% of the overall population by 2050, resulting in a projected Alzheimer's disease prevalence of 27.7 million people in China by 2050. Consequently, there will be a substantial increase in the health and economic burden of Alzheimer's disease on care givers, health care facilities, health care providers, and communities. In China, the challenge of increasing dementia prevalence is compounded by barriers to dementia diagnosis and care including the stigma of dementia, lack of medical school training and resultant lack of health care professionals confident in dementia assessment and management, lack of access to diagnostic blood tests and imaging, and few memory clinics.[2–5] Culturally in China, there is a priority of wanting to live at home for as long as possible, but changing socioeconomic environments mean that family members may not be able to maintain home-based care, especially for those who have to migrate for work. As a consequence, there is a requirement for interventions and community-based supports for people with dementia to help maintain independence within the community and at home. While there is no pharmacological cure for dementia, there is a growing body of evidence for individual and multicomponent non-pharmacological interventions showing benefits for cognition, neuropsychiatric symptoms, daily functioning, and quality of life.[8–19] While there are also some published studies on multicomponent, non-pharmacological interventions for people with dementia that combine activities for the physical, intellectual, functional, and social stimulation,[14–19] we have found no published community-based approach to guide care that encompasses personalized selection of non-pharmacological interventions, active social participation, and dementia education.
This case report describes an elderly female with features of cognitive decline and depression, living at home alone, who was referred to our social care service after diagnosis of Alzheimer's disease. Depression is a risk factor for, and common neuropsychiatric symptom of, dementia. Both dementia and depression can result in cognitive and functional impairment and deterioration in quality of life. Social isolation is a both risk factor for, as well as potential consequence of dementia and depression. With high levels of undetected dementia and depression in older people in China, where specialized dementia social care services remain rare, there is a need for practical, symptom-focused solutions to delivering dementia care in the community. Our dementia social care delivery team has developed a novel, community-based, multicomponent, non-pharmacological intervention program for the management of people with Alzheimer's disease and dementia.
2 Case report
Patient information: A widowed, retired chemistry teacher in her late 70s was living alone in a 2-bedroom apartment in urban Beijing, China. In 2013, her children noticed significant short-term memory impairment, episodes of confusion and difficulty with language skills. She had become reclusive and disengaged from her previous social networks, and no longer attended any community activities or events. During seasonal changes she gradually became disorientated, leading to periods of wandering and becoming lost. She was also collecting and hoarding items of rubbish. The patient's son and daughter were rarely able to visit due to work and family commitments. However, her son recognised the patient's deterioration and provided financial support for her care.
Clinical findings: In September 2013, a local physician made a presumptive diagnosis of Alzheimer's disease based on her presenting symptoms. A Mini Mental State Examination (MMSE) score of 11 was determined. The clinical features were typical for Alzheimer's disease as the patient presented with impaired communication, disorientation, confusion, poor judgement, behavioral changes, and difficulty speaking. Depression was considered a differential diagnosis, however, apathy and depression are also known early neuropsychiatric symptoms of Alzheimer's disease. The patient had no significant past medical or psychiatric history and was not on any regular medications, traditional Chinese medications or supplements. Her physician recommended a medication for Alzheimer's disease, but the patient declined it. Her diet was poor consisting mainly of sugar buns and tea; consequently, she was underweight. Support services previously arranged by the patient's son had not lasted as the patient believed she was independent enough to function at home without help.
Timeline: The patient's timeline is displayed in Table 1.
Diagnostic assessment: Dementia guidelines recommend exclusion of other causes of cognitive decline with blood and urine tests, followed by referral to a memory clinic. However, due to lack of clinical and financial resources, diagnosis was made based on examination and clinical history which is the current pragmatic approach to diagnosis in this patient's community.[2,3] The local physician provided the presumptive diagnosis of Alzheimer's disease to the patient and family based on the patient's symptoms of impaired communication, disorientation, confusion, poor judgement, and behavioral changes. Depression was considered a differential diagnosis, however, apathy and depression are also known early neuropsychiatric symptoms of Alzheimer's disease. This diagnostic information was then provided to our social care manager. Assessment of the patient's scores in March 2018 were as follows: MMSE of 11,[24–26] Clinical Dementia Rating Scale of 2 indicating moderate cognitive impairment,[27,28] Global Deterioration Scale of 5 indicating moderately severe cognitive decline, Geriatric Depression Scale score of 7,[30,31] and a Barthel Index of Activities of Daily Living score of 100.[32,33]
Therapeutic intervention: Our multicomponent dementia social care program, implemented by a social care manager and a social care worker with additional training in dementia, included:
- An in-depth needs assessment leading to a focused, practical care plan
- Non-pharmacological interventions to manage or better cope with symptoms of dementia and functional decline
- Community-based social activities targeted at reducing social isolation and re-integration of the patient into the community
- Dementia education and counselling for carers and surrounding communities to improve understanding, decrease stigma and assist with socialization.
The initial plan was for 3 h of non-pharmacological interventions delivered once a week. The patient was reluctant to start the program but after 2 months of regular visits from the social care worker, the patient agreed to start home-based sessions. Interventions offered included validation therapy, music therapy,[8,9,12] art therapy, reminiscence therapy, talking therapy, reality orientation,[8,34] cognitive training, smell therapy, food therapy, sensory stimulation, garden therapy, and physiotherapy. From March 2018, selection of the personalized non-pharmacological interventions was supported by a structured cognitive intervention pathway developed with input from an academic partner and implemented by the care team as a decision-support tool within the community delivery model. The structured cognitive intervention pathway aligns non-pharmacological interventions with relevant stages and symptoms of dementia based on the available published evidence for each intervention. Following assessment of the patient's needs, interests, preferences, symptoms, and stage of dementia, the pathway facilitated appropriate selection of non-pharmacological interventions. At each intervention episode, the Menorah Park Scale Engagement scale for Dementia was used to determine the patient's level of constructive, other or no engagement from activities. Mood was measured utilizing a 3-point Likert Scale of positive, neutral, and negative mood.[39,40]Table 2 shows the details of the interventions, episodes, and associated overall engagement and mood scores.
In parallel with one-to-one intervention sessions, the care team liaised with local community members regarding re-integration and inclusion in the community. From April 2016, our social worker accompanied the patient once a month to local cultural community events including music and poetry, Dragon Boat, Moon Cake, and Chinese New Year events. In October 2017 our social worker approached the patient's neighbors to educate them on Alzheimer's disease, the lived experience of a person with dementia and to encourage them to increase their interactions with the patient. After a long period of mostly home-based sessions, from April 2018, the patient was encouraged to socialize more frequently within the community and with her neighbors. The social worker accompanied the patient on visits to the community twice a week and the patient socialized almost daily with her neighbors. From May 2018, the patient participated in more active community events which included visiting Tiananmen Square, and physical activities including Tai Chi and light dancing.
Follow-up and outcomes: After the increase in social engagement and active community participation, an improvement in the patient's depression and MMSE scores was noted. The patient's Geriatric Depression Scale score (Fig. 1) progressively improved over the months from March to August 2018 when active social community participation increased. The largest jump in the patient's MMSE score (Fig. 2) was between March and April 2018 when the patient's social participation in the community and time spent outdoors increased.[20,41] The Clinical Dementia Rating Scale of 2 (moderate cognitive impairment), Global Deterioration scale of 5 (moderately severe cognitive decline) and Barthel Index score of 100 remained unchanged over the 12 months.
Interventions that were associated with highest levels of constructive engagement and more positive mood included three of the patient's former hobbies which have been restored: music, art, and gardening. Other domains of improvement included language skills and communication, reduced hoarding, and weight gain (3.6 kg). Increased neighborhood awareness of the patient's condition has enhanced her safety during periods of confusion or wandering. There were no adverse effects reported.
In March 2019, the family employed a domestic worker to live in with the patient to help with cooking and accompany her to community activities. The social care team provided the domestic worker with 6 h of training on person-centred dementia care including some non-pharmacological activities. The patient's son has provided positive feedback about the service. The social care worker still maintains telephonic contact with the patient once a month.
The community-based, multicomponent dementia social care program described in this case report has enabled a socially isolated patient living at home with symptoms of Alzheimer's disease including depression, to re-integrate into her community and return to active participation in cultural activities and former hobbies. Reduction in her social isolation through increased frequency of active community participation was associated with improvement in her mood and prevention of cognitive decline despite her refusal to take any medications for dementia. The increase in the MMSE was noted when the patient's social participation in the community and time spent outdoors increased.[20,41] Time spent outdoors has also been associated with improvement in mood in people with moderate and severe dementia. The MMSE score remained between 14 and 17 over the following 12 months with no decline observed. It can be expected that the MMSE score would drop between 1.8 and 6.7 points annually for people with dementia.[42,43] We acknowledge that the MMSE is intended for use as a screening tool and has practice effects when used repeatedly, however, it is still used in clinical settings to measures cognitive change over time, takes only 5 to 10 min and can be more readily administered by allied health professionals, compared to, for example, the Alzheimer's Disease Assessment Scale—Cognitive section (ADAS-Cog) which takes 40 min. While the ADAS-Cog would be optimal for future planned research, duration, and practical implementation of assessments within services need to be scalable in a large population.
Multimodal non-pharmacological interventions have demonstrated improvement in dementia symptoms, improvement in cognition,[14,18,19] delay in cognitive decline,[14,19] improvement in social behavior and social outcomes,[14,16,17] and improvement in mood and behavioral outcomes for people living with dementia.[14,15,16,18] However, those interventions specifically noted to be delivered in the community were based on short-term interventions without sustained improvement. Furthermore, there is little guidance available on how to implement a community model of non-pharmacological care in a person's home and select non-pharmacological interventions in a rational and systematic way. While the staff applied all the knowledge available, and further resources such as the structured cognitive intervention pathway were developed to facilitate intervention selection and monitoring, we acknowledge that, with a very limited home-care system in China, development and further research of a structured, multicomponent model of home-focused care for people with dementia within the community is crucial. Programs designed to facilitate maintaining independence, quality of life and integration with the community, that can be delivered by a range of social and allied health care professionals and informal carers could help reduce the burden on the formal health care sector. The fundamental factors of education and reducing social isolation are essential to successful implementation of care for people with dementia living alone at home.
The authors would like to thank Charles Young for his editorial oversight and input.
Conceptualization: Mark Mclean Carter, Angelina Wei, Xinlei Li.
Data curation: Mark Mclean Carter, Angelina Wei, Xinlei Li.
Formal analysis: Mark McLean Carter, Angelina Wei, Zara Quail.
Writing – original draft: Zara Quail, Mark McLean Carter.
Writing – review & editing: Zara Quail, Mark McLean Carter.
. Keogh-Brown MR, Jensen HT, Arrighi HM, et al. The impact of Alzheimer's disease on the Chinese Economy. EBioMedicine 2016;4:184–90.
. Chen Z, Yang X, Song Y, et al. Challenges of Dementia Care in China. Geriatrics (Basel, Switzerland) 2017;2:7.
. Jia J, Zuo X, Jia XF, et al. Diagnosis and treatment of dementia in neurology outpatient departments of general hospitals in China. Alzheimers Dement 2016;12:446–53.
. World Health Organization. Global Action Plan on the Public Health Response to Dementia 2017–2025. 2017;Geneva: World Health Organization, http://www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en/http://www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en/
[access August 12, 2019].
. Chen S, Boyle LL, Conwell Y, et al. The challenges of dementia care in rural China. Int Psychogeriatr 2014;26:1059–64.
. Feng Z, Liu C, Guan X, et al. China's rapidly aging population creates policy challenges in shaping a viable long-term care system. Health Aff (Millwood) 2012;31:2764–73.
. Wu B, Carter MW, Goins RT, et al. Emerging services for community-based long-term care in urban China: a systematic analysis of Shanghai's community-based agencies. J Aging Soc Policy 2005;17:37–60.
. Cammisuli DM, Danti S, Bosinelli F, et al. Non-pharmacological interventions for people with Alzheimer's disease: a critical review of the scientific literature from the last ten years. Eur Geriatr Med 2016;7:57–64.
. de Oliveira AM, Radanovic M, de Mello PC, et al. Nonpharmacological interventions to reduce behavioral and psychological symptoms of dementia: a systematic review. Biomed Res Int 2015;2015:218980.
. Scales K, Zimmerman S, Miller SJ. Evidence-based nonpharmacological practices to address behavioral and psychological symptoms of dementia. Gerontologist 2018;58:S88–102.
. Amieva H, Robert PH, Grandoulier AS, et al. Group and individual cognitive therapies in Alzheimer's disease: the ETNA3 randomized trial. Int Psychogeriatr 2016;28:707–17.
. Abraha I, Rimland JM, Trotta FM, et al. Systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. The SENATOR-OnTop series. BMJ Open 2017;7:e012759.
. Patterson C. Alzheimer's Disease International. The World Alzheimer Report 2018, The state of the art of dementia research: new frontiers. 2018;London: Alzheimer's Disease International, 48. https://www.alz.co.uk/research/world-report-2018
[access August 12, 2019].
. Ruthirakuhan M, Luedke AC, Tam A, et al. Use of physical and intellectual activities and socialization in the management of cognitive decline of aging and in dementia: a review. J Aging Res 2012;2012:384875.
. Laver K, Milte R, Dyer S, et al. A systematic review and meta-analysis comparing carer focused and dyadic multicomponent interventions for carers of people with dementia. J Aging Health 2017;29:1308–49.
. Teri L, Logsdon RG, McCurry SM, et al. Translating an evidence-based multicomponent intervention for older adults with dementia and caregivers. Gerontologist 2018;doi: 10.1093/geront/gny122.
. Luttenberger K, Donath C, Uter W, et al. Effects of multimodal nondrug therapy on dementia symptoms and need for care in nursing home residents with degenerative dementia: a randomized-controlled study with 6-month follow-up. J Am Geriatr Soc 2012;60:830–40.
. Schiffczyk C, Romero B, Jonas C, et al. Efficacy of multimodal intervention for people with Alzheimer's disease. Alzheimers Dement 2013;9:654.
. Chalfont G, Milligan C, Simpson J. A mixed methods systematic review of multimodal non-pharmacological interventions to improve cognition for people with dementia. Dementia (London) 2018. 1471301218795289doi: 10.1177/1471301218795289.
. Livingston G, Sommerlad A, Orgeta V, et al. Dementia prevention, intervention, and care. Lancet (London, England) 2017;390:2673–734.
. Chen R, Hu Z, Chen R-L, et al. Determinants for undetected dementia and late-life depression. Br J Psychiatry 2013;203:203–8.
. Alzheimer's Association. 2019 Alzheimer's disease facts and figures. Alzheimers Dement 2019;15:321–87.
. National Guideline Alliance (UK). Dementia: assessment, management and support for people living with dementia and their carers; 2018. Available at: https://www.nice.org.uk/guidance/ng97/evidence/full-guideline-pdf-4852695709
[access August 12, 2019].
. Folstein MF, Robins LN, Helzer JE. The Mini-Mental State Examination. Arch Gen Psychiatry 1983;40:812.
. Li H, Jia J, Yang Z. Mini-Mental State Examination in elderly Chinese: a population-based normative study. J Alzheimers Dis 2016;53:487–96.
. Crum RM, Anthony JC, Bassett SS, et al. Population-based norms for the Mini-Mental State Examination by age and educational level. JAMA 1993;269:2386–91.
. Morris JC. The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology 1993;43:2412–4.
. Lin K, Liu H. Clinical Dementia Rating (CDR), Chinese Version. Acta Neurol Taiwan 2003;12:154–65.
. Reisberg B, Ferris SH, de Leon MJ, et al. Global Deterioration Scale (GDS). Psychopharmacol Bull 1988;24:661–3.
. Yesavage JA. Geriatric Depression Scale. Psychopharmacol Bull 1988;24:709–11.
. Mui AC. Geriatric Depression Scale as a community screening instrument for elderly Chinese immigrants. Int Psychogeriatr 1996;8:445–58.
. Wade DT, Collin C. The Barthel ADL Index: a standard measure of physical disability? Int Disabil Stud 1988;10:64–7.
. Leung SO, Chan CC, Shah S. Development of a Chinese version of the Modified Barthel Index—validity and reliability. Clin Rehabil 2007;21:912–22.
. Mitchell G, Agnelli J. Non-pharmacological approaches to alleviate distress in dementia care. Nurs Stand 2015;30:38–44.
. Cowl AL, Gaugler JE. Efficacy of creative arts therapy in treatment of Alzheimer's disease and dementia: a systematic literature review. Activ Adapt Aging 2014;38:281–330.
. Alzheimer's Society. Talking Therapies (Including Counselling, Psychotherapy and CBT). 2015;London: Alzheimer's Society, Available at: https://www.alzheimers.org.uk/sites/default/files/pdf/talking_therapies_including_counselling_psychotherapy_and_cbt.pdf
[access August 12, 2019].
. Keller HH. Improving food intake in persons living with dementia. Ann N Y Acad Sci 2016;1367:3–11.
. Camp CJ, Orsulic-Jeras S, Lee MM. Wykle M WHPMD, et al. Effects of a Montessori-based intergenerational program on engagement and affect for adult day care clients with dementia. Successful Aging through the Life Span: Intergenerational Issues in Health. New York: Springer Publishing Company; 2004. 159–76.
. Jamieson S. Likert scales: how to (ab)use them. Med Educ 2004;38:1217–8.
. Likert R. A technique for the measurement of attitudes. Arch Psychol 1932;22:55.
. White PC, Wyatt J, Chalfont G, et al. Exposure to nature gardens has time-dependent associations with mood improvements for people with mid- and late-stage dementia: Innovative practice. Dementia (London, England) 2018;17:627–34.
. Hensel A, Angermeyer MC, Riedel-Heller SG. Measuring cognitive change in older adults: reliable change indices for the Mini-Mental State Examination. J Neurol Neurosurg Psychiatry 2007;78:1298–303.
. Clark CM, Sheppard L, Fillenbaum GG, et al. Variability in Annual Mini-Mental State Examination score in patients with probable Alzheimer disease: a clinical perspective of data from the Consortium to Establish a Registry for Alzheimer's Disease. JAMA Neurol 1999;56:857–62.
. Sheehan B. Assessment scales in dementia. Ther Adv Neurol Disord 2012;5:349–58.
. Rosen WG, Mohs RC, Davis KL. A new rating scale for Alzheimer's disease. Am J Psychiatry 1984;141:1356–64.