Caring for the carer

The rate of dementia is on the rise. By 2025 it is expected that over 1 million people in the UK will be living with dementia.¹

In most cases, people with dementia become dependent on a caregiver for their everyday functioning.

Informal caregivers provide most day to day support. Informal caregivers are family and friends who provide ‘hands-on’ care or organize care delivered by others.

Without informal caregivers, people with dementia report poorer quality of life and require earlier institutional care.²

The cost of being a carer

Being a caregiver carries a high financial, social and emotional price.

More than 80% of caregivers of people with dementia experience high levels of stress, often caused by physical, emotional and financial pressures, and almost half experience depression.³ Since dementia is a progressive disease, the impact of caregiving can take its toll over time.⁴ This can lead to burn out- a state of emotional, mental and physical exhaustion. ⁵

Caregiver burden and burnout are key reasons why people with dementia are admitted to institutionalized care.⁶ Yet despite the burden, most caregivers want to support the patient to live independently for as long as possible.⁷

It is therefore crucial to support caregivers in managing their role and keeping their loved ones at home.

When effective support is provided, caregiver burden can be managed. Supporting caregivers not only improves their lives but can also delay nursing home placement and greatly reduces the cost of long-term care.

Caregivers unmet needs

The demands of caring for someone with dementia often lead to caregivers giving up their own activities and interests.⁸ Many caregivers report feeling trapped in their role as a carer (‘role captivity’)⁷ and experience isolation from friends and family.⁸ Social isolation and loneliness increases caregiver burden and burnout.

Respite support for carers is often limited. In one study, two thirds of the caregivers interviewed reported receiving on average 3 hours or less of help per week.⁷ This unmet need increases caregiver strain.⁹

How can we best support caregivers of people with dementia?

Caregivers face challenges that are unique to their own personal circumstances. Research shows that interventions are most helpful for caregivers when they provide holistic and personalized support tailored to address their needs and issues.^{10, 11}

Interventions which include education, emotional support and coping skills reduce depression and stress among caregivers.² Interventions that aim to alleviate social isolation and provide social support have been found helpful and delay institutionalisation of the patient.^8,12

Providing a means to reduce isolation may in turn alleviate caregiver burden and burnout and increase quality of life in both the carer and patient.

Is there an app for that?  

Technology has great potential to provide accessible, holistic and tailored support for dementia caregivers.

Research has begun to explore how technology could help relieve caregiver burden.¹³ Interventions delivered via website or mobile app offer convenient, low-cost alternatives for delivering interventions to caregivers of people with dementia.

Digital platforms can provide accessible support by helping caregivers navigate different services such as organizing respite care, alongside stress-management tools and psychosocial support.¹⁴ Apps can be tailored to target individuals’ personal challenges and help them build coping strategies that work for them.

Technology may also provide a more accessible platform to provide social support to caregivers. For instance, internet support groups are often more convenient than attending face-to-face support groups and help reduce caregiver burden and stress.¹⁵

Emerging research shows dementia carers are open to using technology-driven interventions to help them manage caregiver burden.¹⁴ Tapping into the potential technology offers will allow us to provide accessible, holistic and tailored support for dementia caregivers.¹⁶

 If you’re a caregiver for someone with dementia, check out these websites for helpful resources:

• The Alzheimer’s Association: www.alz.org

• The Caregiver Action Network (formerly the National Family Caregivers Association): www.caregiveraction.org

• Family Caregiver Alliance: www.caregiver.org

• Alzheimer’s Society: https://www.alzheimers.org.uk/get-support/help-dementia-care/looking-after-yourself

References:

1. About dementia-Dementia guide NHS. (2021). Retrieved 30 March 2021, from https://www.nhs.uk/conditions/dementia/about/#:~:text=One%20in%2014%20people%20over,be%20more%20than%201%20million

2. Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners, 20(8), 423-428  https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1745-7599.2008.00342.x

9. Alfakhri, A. S., Alshudukhi, A. W., Alqahtani, A. A., Alhumaid, A. M., Alhathlol, O. A., Almojali, A. I., … & Alaqeel, M. K. (2018). Depression among caregivers of patients with dementia. INQUIRY: The Journal of Health Care Organization, Provision, and Financing, 55, 0046958017750432. https://doi.org/10.1177/0046958017750432

10. Park, M. H., Smith, S. C., Hendriks, A. A. J. & Black, N. (2019) Caregiver burden and quality of life 2 years after attendance at a memory clinic. Int J Geriatr Psychiatry, 34(5), 647-656. https://doi.org/10.1002/gps.5060

11. Gérain, P., & Zech, E. (2019). Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Frontiers in psychology, 10, 1748. https://doi.org/10.3389/fpsyg.2019.01748

12. Toot, S., Swinson, T., Devine, M., Challis, D., & Orrell, M. (2017). Causes of nursing home placement for older people with dementia: A systematic review and meta-analysis. International Psychogeriatrics, 29(2), 195-208. https://doi.org/10.1017/S1041610216001654

13. Ringer, T. J., Wong-Pack, M., Miller, P., Patterson, C., Marr, S., Misiaszek, B., … & Papaioannou, A. (2020). Understanding the educational and support needs of informal care-givers of people with dementia attending an outpatient geriatric assessment clinic. Ageing and Society, 40(1), 205-228. https://doi.org/:10.1017/S0144686X18000971

14. Egilstrod, B., Ravn, M. B., & Petersen, K. S. (2019). Living with a partner with dementia: a systematic review and thematic synthesis of spouses’ lived experiences of changes in their everyday lives. Aging & Mental Health, 23(5), 541-550. https://doi.org/10.1080/13607863.2018.1433634

15. Li, H. (2012). Unmet service needs: a comparison between dementia and non-dementia caregivers. Home health care services quarterly, 31(1), 41-59. https://doi.org/10.1080/01621424.2011.641921

16. Acton, G. J., & Kang, J. (2001). Interventions to reduce the burden of caregiving for and adult with dementia: A meta‐analysis. Research in Nursing and Health, 24, 349–360. https://doi.org/10.1002/nur.1036

17. Williams, F., Moghaddam, N., Ramsden, S., & De Boos, D. (2019). Interventions for reducing levels of burden amongst informal carers of persons with dementia in the community. A systematic review and meta-analysis of randomised controlled trials. Aging & mental health, 23(12), 1629-1642. https://doi.org/10.1080/13607863.2018.1515886

18. Richardson, T. J., Lee, S. J., Berg-Weger, M., & Grossberg, G. T. (2013). Caregiver health: health of caregivers of Alzheimer’s and other dementia patients. Current psychiatry reports, 15(7), 367. https://doi.org/:10.1007/s11920-013-0367-2

19. Godwin, K. M., Mills, W. L., Anderson, J. A., & Kunik, M. E. (2013). Technology-driven interventions for caregivers of persons with dementia: a systematic review. American Journal of Alzheimer’s Disease & Other Dementias®, 28(3), 216-222. https://doi.org/10.1177/1533317513481091

20. Murray, E, Burns, J, See Tai, S, Lai, R, Nazareth, I. Interactive health communication applications for people with chronic disease (review). Cochrane Database of Syst Rev. 2005;(4):CD004274. https://doi.org/10.1002/14651858.CD004274.pub3

21. Lee, E. (2015). Do technology-based support groups reduce care burden among dementia caregivers? A review. Journal of evidence-informed social work, 12(5), 474-487. https://doi.org/10.1080/15433714.2014.930362

22. Guisado-Fernández, E., Giunti, G., Mackey, L. M., Blake, C., & Caulfield, B. M. (2019). Factors influencing the adoption of smart health technologies for people with dementia and their informal caregivers: scoping review and design framework. JMIR aging, 2(1), e12192. https://doi.org/10.2196/12192