Interested in cognitive elf? A new intervention called ‘the Care Ecosystem’ seems to be a cost-effective method of improving dementia care. A recent randomised clinical trial indicates that it improves the quality of life and reduces hospitalisation for people with dementia and benefits their caregivers (Possin et al, 2019).

One in three people in the UK over the age of 65 will develop dementia and will require increasing levels of care as the disease progresses. Of those living with dementia, 2 in 3 will live at home, meaning there are around 670,000 unpaid carers in the UK. This puts carers at a higher risk of anxiety, depression, and stress. In fact, unpaid carers contribute 44% of overall dementia spend. The financial strain also impacts services; people with dementia have a higher risk of hospitalisation and longer admissions.

Interventions to support carers are important because, as previous blogs have highlighted, caregiver burden is affected by services and support. The Care Ecosystem is a telephone-delivered intervention aimed at improving people living with dementia’s quality of life. People with dementia and their carer are given a ‘care team navigator’, who provides personalised support and teaches them about dementia. Phone calls are scheduled once a month, for 12 months. The assigned care team navigator has a support network of specialists including a senior nurse, social worker, and pharmacist. This means the carers and people with dementia will have someone to contact when they need help.

Methods

The researchers conducted a single-blind randomised clinical trial, with participants randomised to either the Care Ecosystem (intervention) or usual care (control group). The purpose of this research was to answer the question ‘is the care ecosystem effective in improving outcomes important for persons with dementia, their caregivers and payers beyond those achieved with usual care?’ (Possin et al., 2019, p.1658).

Participants with a diagnosis of dementia and their caregivers were referred to the study by treatment providers or through self-referral.

Eligibility criteria:

• Dementia diagnosis
• Aged ≥45
• Enrolled in or eligible for Medicare or Medicaid (health insurance for disadvantaged or vulnerable people)
• Residents of California, Iowa or Nebraska
• Not living in a nursing home
• Has a caregiver
• Both caregiver and person with dementia fluent in English, Spanish or Cantonese.

Of the 2,585 dyads referred (those with dementia and their carer), 780 dyads were eligible to take part. 512 pairs received support through the Care Ecosystem, and another 268 received usual care. Therefore, the randomisation was imbalanced, meaning twice as many participants were allocated to the intervention group than routine care. In general, most of the participants’ baseline characteristics did not differ substantially between the intervention and control group.

The outcome measures were assessed at baseline, 6 months, and 12 months, including:

• Quality of Life in Alzheimer’s Disease (QOL-AD)
• Frequency of emergency department visits
• Hospitalisation
• Ambulance use events
• Caregiver depression scores (PHQ-9)
• Caregiver burden scores (Zarit Burden Interview)
• Caregiver self-efficacy (The Care Ecosystem Caregiver Self-Efficacy Scale).

The researchers were blinded to the treatment randomisation at baseline and 6 months, but not at 12 months.

Results

Persons with dementia who undertook the Care Ecosystem intervention were more likely to maintain their quality of life over a 12-month period compared to those in the control group.

The Care Ecosystem intervention saved money for health services. Over the 12-month period, the intervention prevented 120 emergency department visits, 16 ambulance use events and 13 hospitalisations, resulting in an estimated mean cost saving of $600 per person with dementia.

Caregivers reported fewer depressive symptoms 6- and 12-months into treatment. Further, those with moderate-to-severe depression at baseline demonstrated a significant decrease in symptoms, whereas those in usual care showed an increase in depressive symptoms. Carers also reported feeling more able to care for their loved one 6-months into treatment. This increase continued to 12-months but did not reach statistical significance (p=0.11). Caregiver burden decreased significantly in the Care Ecosystem intervention group at 6- and 12-months into treatment.

Almost all carers (97%) reported that they would recommend the Care Ecosystem to another caregiver and 78.3% were either very satisfied or satisfied with the intervention.

Conclusions

This randomised clinical trial demonstrated that the Care Ecosystem can be effective for people living with dementia and their caregivers, with a range of benefits, such as fewer emergency department visits, significant improvements in the quality of life for people living with dementia and improved caregiver burden, self-efficacy, and depression after 6 months. Additionally, maintained improvements in burden and depression at 12-months were also reported, while the intervention was a cost-efficient alternative for individuals unable to access services in person, e.g. because they are homebound or live too far away.

Strengths and limitations

The study has notable positives:

• The long-term outcomes were assessed and compared, enabling comparisons to be made between the longer-term benefits of the Care Ecosystem and routine care
• A “single-blind trial” was used; meaning the researchers were unaware of which condition participants were in when collecting the relevant information from carers and persons with dementia. Thus, they cannot influence, or cherry-pick results
• The study included many people (1,560), so is likely to reflect the general population more accurately
• Intention-to-treat analysis was used, which means that the analysis and results consider losses to follow-up. Thus, the results are more representative of the true effect of the Care Ecosystem.

There are, however, some downfalls:

• The Care Ecosystem was only tested in three states of the USA: California, Iowa and Nebraska. There might be challenges in implementing this within the NHS and other public sector healthcare systems found throughout Europe, and indeed more globally, compared to the American privatised system
• Unfortunately, carers and persons with dementia in worse circumstances are less likely to sign up to a research study. This makes it hard to determine what effect the Care Ecosystem would have on those with more severe dementia and their caregivers
• Although the study blinded the researchers collecting the survey results at baseline and 6-months, the researchers were unblinded at 12-months. Thus, as the researchers were aware of the condition the participants were randomised to, this may have influenced the results
• The measure used to assess caregiver self-efficacy (The Care Ecosystem Caregiver Self-Efficacy Scale) has not been validated. Furthermore, this scale was created in relation to the Care Ecosystem, indicating potential measurement bias. Therefore, these results should be interpreted with caution.

Implications for practice

These results are promising; demonstrating the widespread benefits of the Care Ecosystem for persons with dementia, carers, and health services.

This intervention was delivered in English, Cantonese, and Spanish, raising the possibility that the Care Ecosystem could be offered in a variety of different languages. This would be beneficial in reaching those who are often unable to access any support due to language barriers, especially in countries with multi-cultural populations.

Furthermore, this study indicates that valuable support can be delivered to those with dementia and their carers via telephone. This is particularly relevant during the current pandemic, as these individuals could be supported, without requiring face-to-face contact. It also enables more people to be helped, accessing those living in rural areas, or unable to travel.

Moreover, these results demonstrate the importance of supporting carers of those with dementia, having promising effects on the carers themselves, as well as the individuals with dementia, and the health service in general.

Statement of interests

None.

Contributors

Thanks to the UCL Mental Health MSc students who wrote this blog from Bisby B Group: Anna Olsen, Hazel Greer (@HazelGreer16), and Andie Ashdown (@andieashdown).

UCL MSc in Mental Health Studies

This blog has been written by a group of students on the Clinical Mental Health Sciences MSc at University College London. A full list of blogs by UCL MSc students from can be found here, and you can follow the Mental Health Studies MSc team on Twitter.

We regularly publish blogs written by individual students or groups of students studying at universities that subscribe to the National Elf Service. Contact us if you’d like to find out more about how this could work for your university.

Links

Primary paper

Possin L, K, Merrilees J, J, Dunlaney, S. et al (2019) Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use. The Care Ecosystem Randomized Clinical Trial. JAMA Internal Medicine 2019 179(12) 1658-1667.

Other references

Connors, M. H., Seeher K., Teixeira-Pinto A., Woodward, M., Ames D., Brodaty H. (2019). Dementia and caregiver burden: A three‐year longitudinal study. International Journal of Geriatric Psychiatry. 35. 10.1002/gps.5244.

Frisira, E. (2020). Dementia care: what increases caregiver burden? Mental Elf. Last accessed: 12 June 2021.

Photo credits

• Photo by Matteo Vistocco on Unsplash
• Photo by Tatiana Zanon on Unsplash
• Photo by Gus Moretta on Unsplash
• Photo by Quino Al on Unsplash
• Photo by Leonardo Toshiro Okubo on Unsplash