Caregivers of People with Neurodegenerative Diseases: Profile and Unmet Needs from a Population-Based Survey in South Australia

Abstract

Introduction: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. Methods: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using w 2 were complemented with a regression analysis. Results: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. Conclusion: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.

Bereavement support for family caregivers: The gap between guidelines and practice in palliative care

“…Although these 20 guidelines were framed from a service provider perspective, we asked the questions from the bereaved people’s perspective regarding five of these guidelines (numbers 8, 12, 13, 17, 19). Questions on perceived support were adapted from the VOICES survey [ 22 ] and one question on level of caring was adapted from the Omnibus survey [ 23 ].…”

Potential Role of Wearable, Ambulatory and Home Monitoring Systems for Patients with Neurodegenerative Diseases and Their Caregivers

“…Although some technological solutions are already available, there is still an unmet demand of more tailored, responsive and flexible models of care for people with NDDs and of support for their caregivers [2]. On the base of the experience in the Assistive Technology, Neuromotor and Wearable Technologies of our department, we are addressing these issues by working on wearable technology and on simple multimodal communication endpoints with audiovideo communication channels and asynchronous exchange of information.…”

“…Recent studies emphasized that this approach still leaves a number of unmet needs in caregivers [2], and difficulties in coping with NDDs for patients [3]. In fact, the usual approach is mainly based on pharmacological treatments (often palliative), sometimes on rehabilitation physical therapies, and, seldom, on psychological support.…”

How integrated are neurology and palliative care services? Results of a multicentre mapping exercise

“…For example, Parkinsonism patients experience on average more than 10 symptoms [ 5 ], which also include many non-motor symptoms such as fatigue or psychological problems [ 6 ]. These diseases also pose significant demands on caregivers [ 7 ] who experience unmet needs [ 8 ].…”