Dementia is recognised as one of the major global health and social care challenges of present times. When the onset of dementia occurs in midlife, there is an increased possibility that there are children and young adults involved who are dependent on the parent concerned. The aim of the study was to describe health and social care professionals’ experiences of identifying and supporting children and young adults with a parent with dementia. A qualitative descriptive approach was carried out with individual interviews of health and social care professionals, using a semistructured interview guide. Thirteen participants in rural and urban areas in Sweden were interviewed. The overarching theme, advocating a forgotten group with three categories were identified. They combine and reflect health and social care professionals’ experiences of identifying and supporting children and young adults with a parent with dementia. Health and social care professionals who encountered children and young adults with a parent with dementia described how they were not sufficiently trained in supporting this group and identified a general shortage of available appropriate support services. The children and young adults were also described as a forgotten and overlooked group in need of affirmation and support in a more systematic way.

BACKGROUND: The inclusion of palliative care in policy has been encouraged internationally, and gradually implemented, including in Sweden. Care should be driven by policy; hence, examining how palliative care is included in national policy documents is paramount.

OBJECTIVES: This study aimed to examine how palliative care is included in national disease-specific policy documents for adults with chronic conditions, cancer and non-cancer, with potential palliative care needs.

DESIGN: Document analysis.

METHODS: A document analysis of Swedish policy documents for different disease-specific groups with severe chronic conditions, cancer and non-cancer, was performed. In total, 96 documents were analysed.

RESULTS: How palliative care was included in the policy documents varied from mentioning the term without explanation to detailed discussion regarding palliative care practice. Such discussion encompassed several conceptualisations of palliative care: defined through authorities' definitions; as care of dying persons; integrated with disease-specific care and treatment; limited to disease-specific medical treatments or based on detail regarding certain key elements of palliative care such as specialised palliative care and end-of-life conversations.

CONCLUSION: There may be large variations in how palliative care is conceptualised in national disease-specific policy documents, as disclosed by this analysis of the Swedish case. Limiting palliative care to disease-specific medical treatments (most commonly palliative oncological treatments) or the care of dying persons limits its scope in ways contrary to current evidence supporting early integrated palliative care. The lack of palliative care recommendations adapted for each specific diagnosis indicates a gap in policy. To promote equal access to palliative care regardless of patients' diseases or medical conditions, the importance of how palliative care is included in national policy documents needs to be further acknowledged and discussed - with palliative care consistently included in such documents.

BACKGROUND: Palliative care needs in patients with cardiovascular diseases (CVD) are expected to increase. For the planning of equitable palliative care, it is important to understand where people with CVD die. The aim was to examine trends in place of death, associated factors including utilization of specialized palliative services, and to what extent longitudinal development is influenced by national policy.

METHODS: A population-level registry study of place of death for adults deceased due to CVD (n = 209 671) in Sweden 2013-2019. Linear regression analysis was applied.

RESULTS: The predominant place of death was nursing home (39.1 %) and hospital (37.6 %), followed by home (22.0 %). From 2013 to 2019 home deaths increased by 2.8 % and hospital deaths decreased by 3.0 %. An overall downward trend was found for dying in hospital compared to dying at home. With variations, this trend was seen in all healthcare regions and for all CVD types, except Stockholm and cerebrovascular disease, with no significant trend. Overall, but with cross-regional variations, 2.1 % utilized specialized palliative services, while 94.2 % had potential palliative care needs. Other variables significantly influencing the trend were age and having had an unplanned healthcare visit.

CONCLUSION: Despite a slight positive trend, only a minority of people with CVD die in their own home. Regional variations in place of death and the low and varied utilization of specialized palliative services indicate inequity in access to palliative care. Hence, the impact of current national policies is questionable and calls for strengthening through inclusion of early palliative care in specific CVD policies.