Our study found that the most common unmet needs reported by caregivers were similar to those found in The Netherlands by van der Roest et al.
, these being daytime activities (understood as any activity that allows persons with dementia to occupy themselves such as social, stimulation or leisure activities), company and psychological distress. However, van der Roest et al.
 found that caregivers reported memory as one of the most frequent unmet need. This may relate to differences in service provision between the countries. For example, in the United Kingdom, people with dementia often have access to a community mental health team whereas in The Netherlands, services may be less systematised. Alternatively, it may be a result of UK participants being generally recruited from people with dementia known to services so that their memory needs had already been addressed. In both the United Kingdom and The Netherlands, there were services available to meet the needs that were unmet. There could be different reasons why services are not meeting the needs of people with dementia such as lack of suitability, lack of caregiver satisfaction with the services and/or refusal of services already offered. In line with the results of van der Roest et al.
, the current study found that the most common unmet needs reported by people with dementia were psychological distress, daytime activities, company and information (about care and treatment). Whereas van der Roest et al.
 found memory to be the second most common self-reported unmet need (11.9%), in this study memory was one of the less common unmet needs (3.2%). Memory was mostly (89.3%) met by receiving informal and formal help together. As mentioned previously, differences in identified needs may lie in differences of service provision and coordination.
The needs expressed by people with dementia in the review of von Kutzleben et al.
 are in line with the most frequent unmet needs that we found. For example, the theme “emotions” refers mainly to negative feelings reported by people with dementia, such as anger, sadness, loneliness, confusion and worrying. All these feelings correspond to “psychological distress,” which, in our study, was the commonest unmet need reported by people with dementia. In the same way, the topics “losses and restrictions”, “maintaining normality”, and “dementia as a challenge for relationships”, which refer respectively to loss of meaningful activities and meaningful relationships, the need to continue doing the things they used to do and being useful for others, and also the loss of intimacy with the partner and potential conflicts with relatives, reflect what people with dementia reported in our study as unmet in the areas of “daytime activities” and “company”. It is a matter of concern that in our study, as well as in residential care
, people with dementia reported most of the needs found by von Kutzleben et al.
, van der Roest et al.
 and de Boer et al. as unmet (psychological distress, company, information, and daytime activities). If these areas are shown in the literature as those more reported and consequently more important from the point of view of the person with dementia, and they are yet unmet, it is essential that services and community organisations focus their resources on providing better care for improving those areas. This highlights the importance of involving people with dementia in their own care, of asking what kinds of support are more suitable for them, and of assessing the quality and appropriateness of the services provided.
Comparing the needs among users, caregivers, and professionals
The most common needs were similar among people with dementia, caregivers, and the professionals, including memory, food, looking after the home, and money. Across all the areas of the CANE, the maximum possible agreement achieved was over 0.60, indicating good agreement between users, caregivers, and the professionals on identifying needs. The agreement was higher between professionals and caregivers than between people with dementia and caregivers and people with dementia and professionals. This could mean that the professionals took more account of the perspective of the caregiver than of the person with dementia, given that the levels of need are closer.
In agreement with previous studies
[5, 6, 18], people with dementia reported different and significantly fewer needs (met and unmet) compared with their caregivers and the professionals. This could be explained by several reasons. In our study, no association was found between level of cognitive impairment (on the MMSE) and the number of unmet needs reported by people with dementia. However, awareness of cognitive impairment may be more important than its actual level since people who lack awareness of their problems may rate their quality of life as higher
. In a review of qualitative studies of people in the early stages of a dementia, Steeman et al.
 found that some people with dementia ignored their difficulties as a way to deal with perceived threats such as loss of autonomy. One more plausible reason is that people with dementia had different priorities or concerns compared with their caregivers and professionals. For example, for people with dementia the most frequent unmet need was “psychological distress” whereas for caregivers and professionals this was the third most frequent, “daytime activities” being the commonest. It may also be that, having different priorities, people with dementia reported fewer needs than caregivers and professionals in the items of the CANE because not all the areas that people with dementia consider as important are covered by this instrument, such as areas of loss (“coping with disabilities”, “acceptance of dementia and help”, and “grief and frustrations about disabilities”), and self-esteem/self-image
. Depending on the aims of future research, the CANE may be used to complement other measures that include the topics mentioned.
“Information” (about the disease and support available) was the only unmet need rated higher by both caregivers and people with dementia (compared with professionals). This result is in accordance with other studies. In two reviews
[9, 21] it was found that people with dementia highly value the reception of continuous information during the progress of the disease, from the disclosure of the diagnosis to what services are available for them. Also, in a survey carried out among people with dementia living at home in the United Kingdom, Lakey et al. found that 38% of people with dementia reported that they were not receiving any information or were getting some but not enough information about their condition. In addition, 68% of the persons with dementia received a diagnosis at least a year after the onset of the symptoms. These issues makes coping with the disease difficult for the person with dementia. A better provision of information might help people appraise their needs more accurately and help them to cope with the dementia in a more adaptive way, including a better use of services.
Discrepancies between people with dementia versus caregivers and professionals confirm the importance of including not only the professional and caregiver view about the needs of person with dementia but also their own views. It is important to notice that a lower agreement in perceived needs was found between people with dementia and their caregivers. This may have consequences in terms of seeking, acceptance, and compliance with treatment. It has been found that, when people with dementia perceive their subjective needs are not being taken into account by professionals, they report a bad communication and interaction with the health care system
. In contrast, when people with dementia and their caregivers feel that they are both taking part in their own care, the quality of life and self-esteem of people with dementia are improved
[23, 24]. Related to this, Lakey et al. found that 51% of people with dementia perceived they were not able, or were able only sometimes, to make decisions about their day-to-day lives. Also, 44% felt that professionals did not involve them, or that they did only sometimes, in decisions about their care and support. The CANE is a useful tool to assess different perspectives on needs. Using it would allow care practitioners to provide appropriate care packages that meet the needs of people with dementia by considering the scope for negotiation, flexibility and creativity.
In terms of limitations, the sample was drawn from those known to services and consequently the results cannot necessarily be generalised to people with dementia living at home who have not been in contact with services. Also, complete data from user, caregiver and professional assessments of needs were not available for every participant, limiting the power of the analysis, and this is likely to be due to the lack of a caregiver in some cases, but also the range in the severity of people with dementia leading to some being unable to complete the assessment of their own needs. The CANE is primarily a clinically-based assessment and a strength of this study was that all the researchers were experienced professionals in clinical psychology/old age psychiatry which is likely to improve the clinical validity of the results; previous work has shown that mental health nurses can also make accurate assessments. Bearing in mind that participants were known to services, there are a number of implications for service providers and commissioners. Many people lacked company and daytime activities and also had depressive symptoms suggesting that there should be better provision of social resources such as day centres and possibly more support (or respite provision) for caregivers (who rated these needs as more common). Also, unmet needs for eyesight/hearing were very common, suggesting that better assessment for and/or provision of glasses and hearing aids would have benefitted many people, especially as sensory problems have a major impact on communication in people with dementia.