How can we support family caregivers of people with an intellectual disability and dementia?

Authors: Caroline Lennon-Nally, Health Service Executive, National Quality Improvement Team, Ireland, member of mySupport study Strategic Guiding Council and Maria Nicula, McMaster University, Canada, mySupport study Early Career Researchers’ Committee member
Date of publication: October 2021
Keywords: Intellectual disability, Down’s syndrome, Dementia, Palliative care, Family caregivers, Classic diagnostic tools, Cognitive Assessment, Neuroimaging

Family caregivers are instrumental to the care of people with dementia in long-term care. However, as end-of-life nears, family caregivers are often left feeling stressed, overwhelmed, and uncertain of how to make the right decisions for their loved ones. For this reason, mySupport study aims to support family caregivers and care home staff in the decision-making process in residential care homes across six countries (for more details about the study, please visit www.mysupportstudy.eu).

Greater risk for developing dementia
Although many health conditions are studied and understood individually, it is useful to explore conditions that frequently co-occur or interact with one another; one such comorbidity exists in people living with dementia and an intellectual disability. People with intellectual disabilities are at a greater risk for developing dementia, and at a faster rate, than the general population.¹ A 20-year-long longitudinal study found that the risk of developing dementia grew from 23% at age 50 to 88% risk by age 65 years among persons with an intellectual disability.² More specifically, people with Down’s syndrome are more likely to experience Alzheimer’s disease with a younger onset, a more rapid decline in health, and a greater chance of earlier death.¹

Diagnosing dementia in people with an intellectual disability
People with intellectual disabilities do not meet all the traditional criteria for dementia when they develop this condition or they may have mixed presentations of dementia, the latter of which is also true for the general population. For instance, some researchers have found that changes to the behaviour, personality, or declines in executive function among people with Down’s syndrome may occur before any changes in their memory become evident. Additionally, almost 80% of people with Down’s syndrome and dementia will develop new onset epilepsy compared to 11% in the general population.²  This combination of conditions makes it difficult for healthcare professionals to diagnose dementia in people with an intellectual disability.¹

Classic diagnostic tools
Classic diagnostic tools used to assess dementia are not appropriate for use in this group, given that a change in cognitive functioning in the person from an earlier timepoint is needed.³ Thus, healthcare professionals are encouraged to use other approaches to assess people with an intellectual disability for dementia, such as to actively monitor cognitive ability by using screening checklists tailored for this population and refer people in this group for a comprehensive cognitive assessment or neuroimaging tests if dementia is suspected.¹

Managing a dementia diagnosis
The management of dementia in people with intellectual disabilities requires many key players, including primary care providers, specialists, healthcare professionals who work in the disability and aging sectors, and family carers.¹ The affected person is likely eligible to receive care from multiple institutions. A coordinated network of family members and healthcare providers ensures that any decline in health of the person is informed by knowledge regarding the progression of both conditions and aligns with the wishes of the affected person and their loved ones.

Supporting Family Caregivers
Receiving a diagnosis of dementia for one’s sister, brother, daughter, or son with an intellectual disability can intensely influence the mental health of the family members caring for their loved one and feelings of self-efficacy when making decisions on their behalf.¹ For this, healthcare providers are encouraged to monitor the wellbeing and level of burden experienced by these carers and offer support during difficult times.

This brings us to the story of Caroline Lennon-Nally. Caroline, from Ireland, who was the sister and family carer of Brenda—a person with Down’s syndrome who developed dementia in her mid-30s. Brenda passed away in May of 2017. Caroline was resoundingly grateful for the support, love, and appropriate professional care that Brenda received, which enabled her to live her remaining days in the place that had become her home.

What makes for an excellent care experience is a facility’s flexibility to adapt their current services to meet the needs of individuals, the willingness to collaborate with specialists in other fields, and to be inclusive and welcoming of family involvement. For instance, Brenda was supported by Delta Centre in Carlow that provides training, residential, respite, day, and multi-sensory services to adults with learning disabilities. This service was flexible and supportive during Brenda’s journey. They worked with local general practitioners, public health nurses, health professionals (i.e., neurologist, psychiatrist), and most notably, an end-of-life homecare team that came into the picture closer to the final stages. Caroline shared that, although her sister’s journey was difficult, the willingness of healthcare providers to collaborate with one another and to be inclusive of Brenda’s family in decision making ensured that Brenda’s end-of life experience was pain-free, respectful, and full of kindness.

Caroline suggested that it may be helpful to organise a panel of caregivers with experience in advocating for their loved one who are willing to support family members new to this challenge. This mentorship opportunity can provide new carers with the benefit of other people’s lived experience and offer them the validation and support they may need to advocate for their loved one.

Conclusion
A significant proportion of people with intellectual disabilities develop dementia in their lifetime. Yet, people in this group as well as their families report that it is hard to navigate assessment and treatment. It is important that researchers, clinicians, and policymakers prioritise the development of assessment tools that are tailored to this population as well as the exploration of management strategies and health services plans to help people with an intellectual disability and dementia. Additionally, it is important for healthcare providers to tailor their care approach, regardless of their original discipline, to meet the needs of each individual.  In conclusion, it takes collaboration, flexibility, and love to provide person-centred and well-rounded care for people with an intellectual disability and dementia.

References:

1. Evans, E. & Troller, J. (2018). Dementia in people with Intellectual Disability: Guidelines for Australian GPs. [Doctoral dissertation, University of New South Wales, Sydney]. [Accessed 23 Aug 2021]
2. McCarron, M., McCallion, P., Reilly, E., Dunne, P., Carroll, R., & Mulryan, N. (2017). A prospective 20‐year longitudinal follow‐up of dementia in persons with Down syndrome. Journal of Intellectual Disability Research, 61(9), 843-852. https://doi.org/10.1111/jir.12390 [Accessed 23 Aug 2021]
3. Torr, J. (2016). Dementias. In C. Hemmings & N. Bouras (Eds.), Psychiatric and Behavioural Disorders in Intellectual and Developmental Disabilities, Cambridge, UK: Cambridge University Press. https://doi.org/10.1017/CBO9780511543616 [Accessed 23 Aug 2021]

Meet the authors

Caroline Lennon-Nally, mySupport study Strategic Guiding Council PPI Member, Ireland

Caroline is a health care professional and Interfaith Minister. Caroline lost her sister and mother to dementia. Caroline’s sister was born with Down’s syndrome and was in the eighth percentile of people with Down’s syndrome who develop dementia in their mid-30s. Five months after Caroline’s sister’s death, her mother was admitted to a residential care home because she too had developed dementia.

Participating in long-term care research helps Caroline give a level of meaning to her lived experience and provides an opportunity for her to help other people who may be on a similar journey.

Maria Nicula, mySupport study Research Assistant, McMaster University, Canada

Maria Nicula currently works on the mySupport Team as a research assistant supervised by Dr. Sharon Kaasalainen with the McMaster University team in Canada. She graduated from McMaster University with a Bachelor of Science in Psychology, Neuroscience, and Behaviour in the Mental Health Specialization in 2018, and is now back at McMaster pursuing her Masters of Science in the Health Research Methodology Program.

Over the past few years, she has worked with the McMaster team on projects related to building capacity in end-of-life care and palliative care amongst staff in long-term care, evaluating tools that help residents, families, and staff have conversations about advance care planning and end-of-life wishes, and study interventions that aim to improve the quality of life for persons with dementia and their families. Although she has worked in the palliative care field for some time, her research interests also centre around the factors that influence the etiology, development, and treatment success associated with various mental illnesses, specifically affective (Major Depressive Disorder, Bipolar Disorder), anxiety, and eating disorders.