Persons with dementia, who reside in their own homes, are often cared for by family members. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory also known as neuropsychiatric symptoms. Quality of life for both the person with neuropsychiatric symptoms and their careers are affected, increasing suffering and risk for hospitalisation and admission to long-term residential care. Family careers to persons with dementia have identified behavioural changes as more distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience neuropsychiatric symptoms in a community setting. The aim was to describe spouses' experiences of living with partners who have developed neuropsychiatric symptoms related to dementia in a community setting. Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included completion of the neuropsychiatric inventory. Interview data were analysed using a content analysis approach. The results showed that spouses identified in the neuropsychiatric inventory that partners with dementia had on average five to eight co-existing symptoms. Frequency, severity and distress varied. From the narrative data, the theme living on the edge lacking support and time for self, emerged. The findings of this study suggest that support offered to persons with dementia and their spouses should have a person-centred approach meeting individual needs. Safety and welfare of persons with dementia and their spouses residing in their own homes may be jeopardised in the presence of neuropsychiatric symptoms. A greater awareness is required in the community regarding the well-being of these persons.

Aim To describe older persons who had commenced a memory assessment, experiences of living with memory impairment and related symptoms. Background Persons with subjective memory impairment are two times more likely to develop dementia over the years than their peers. Older persons seldom seek help from primary health care clinics solely for subjective memory impairment. Of those who seek help, it can take up to 35 months from the person experiencing initial symptoms to referral to a memory clinic. Further research is needed regarding how older persons live with memory impairment with related symptoms before they receive a memory diagnosis. Method A qualitative study with 23 participants who had commenced a memory assessment in primary care. Semi-structured interviews were held. During the interviews, the Neuropsychiatric Inventory was completed and discussed with the participants. Interview data were analysed using Interpretive Description. Results The results are presented under four themes: Conflicting views about the situation, Unveiling the presence of neuropsychiatric symptoms, Compensating with external and internal strategies to recall and Worrying about self and future. Persons with memory impairment were encouraged by family members or others to seek a memory assessment. Few persons were self-referred as memory impairment was often seen as a part of aging. Polarised viewpoints existed within the families regarding the impact of memory impairment on daily life. The presence of neuropsychiatric symptoms appeared unexplored in the participants seeking a memory assessment. In this study, the majority of participants experienced neuropsychiatric symptoms at the time of contact for a memory assessment. Conclusions Memory problems experienced were often viewed by the person as being part of an aging process. The presence of neuropsychiatric symptoms was not acknowledged as being connected to memory impairment. Contextualising ‘memory impairment’ as a part of a ‘cognitive process’ may help the person in identifying the presence of neuropsychiatric symptoms.

Aim To describe family members' experiences of living with persons with neuropsychiatric symptoms (NPS) related to frontotemporal dementia (FTD). Background The majority of persons with dementia during the disease trajectory develop NPS. Persons with FTD are likely to develop greater levels of NPS than persons with other types of dementias. Research‐based knowledge regarding family members' experiences of living with persons with FTD and NPS is limited. Methods Nine family members of persons with FTD were interviewed. Interviews commenced with completion of the Neuropsychiatric Inventory (NPI). Upon completion of the NPI, questions were posed from an interview guide where study participants provided in‐depth information about NPS identified. Interview data were analysed using qualitative content analysis. Results Interviewed family members highlighted that persons with FTD had developed between four and eight co‐existing NPS. Irritability and disinhibition were the most common NPS, with variations in severity, frequency and distress. From the interview data, two themes emerged: Living with a well‐known stranger and Coping and overstepping social norms. Conclusions Living with a well‐known stranger depicted a new co‐existence with a loved one with changes in personality and behaviour, which were not inherent to the person or predictable any more. The presence of NPS can threaten the safety of the person with FTD and their family in real world and on social media. Support offered should focus on the person's physical and psychological needs, not on a diagnosis. Implications for practice From a health care perspective it is important to see the person with FTD and their family as unique individuals with specific needs.