Between a rock and a hard place: Exploring the service needs of ...

Copyright © eContent Management Pty Ltd. Contemporary Nurse (2011) 39(2): 130–139.

Between a rock and a hard place: Exploring the service needs of younger people with dementia DENISE CHASTON Universal College of Learning, Palmerston North, New Zealand; NWAHS Clinical Nurse Case Manager, Department of Health and Human Services, Ulverstone TAS, Australia

ABSTRACT The commonly held perception that dementia is a condition of older age belies the fact that people under 65 years, and younger, present with dementia. Services for people with dementia have traditionally focused on the needs of older adults; people who are retired and more dependent. Younger people with this condition however, face different changes related to their young families’, current employment and at times gaining a diagnosis. Traditional healthcare services do not adequately cater for the needs of this population and evidence suggests a need for specialised service provision for younger people with dementia (YPWD). While specific services have been initiated in some counties, in New Zealand there is little evidence of recognition of this problem. To consider the effectiveness of available services a literature review was undertaken to determine the need for age appropriate services for YPWD. Two main themes were identified, these relate to age appropriate service provision, a single entry point into services, and a defined care pathway. While there is some debate about the adequacy of existing services in meeting the needs of YPWD, the consensus suggests the importance and need for a focused specialised service to address the unique needs of this group. Further research is required to clarify the form and structure of a specialised service that supports best practice and meets the needs of YPWD in New Zealand. Keywords: early onset dementia; younger people with dementia; working age dementia; young onset dementia; service development; age-appropriate services and dedicated services; nursing

INTRODUCTION

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raditionally the allocation of resources and responsibility for those people diagnosed with dementia under the age of 65 years has been haphazard, and this has led to a situation whereby many people with this condition have ‘fallen through the net’ of health care provision. In some countries younger people with dementia (YPWD) have been largely the responsibility of older age psychiatry services because such services have expertise in the assessment and

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management of people with dementia (Royal College of Psychiatrists, 2006). However, services for older people often inadequately attempt to meet the younger person’s needs, and rarely have the protection of contractual agreements with service commissioners (Royal College of Psychiatrists, 2006). As a consequence, access to appropriate services and quality care for YPWD is random. Historically there is a universal age specific entry criteria to services (Harvey, 1998). As the traditional cut off point for services

Exploring the service needs of younger people with dementia is arbitrary set at 65 years, YPWD dementia attempt to access a variety of healthcare provision. This highlights the absence of a consistent entry point and the absence of a defined pathway of care for this group of people. This paper will firstly summarise the issues facing YPWD and the availability of healthcare services, including the personal and professional perspectives of the author. The search strategy is then described and the literature review is summarised under two key themes. The paper concludes with recommendations for the future.

BACKGROUND It has been highlighted in a range of sources that when dementia occurs in people under 65 years, the condition causes additional and unique problems (Fitzgerald and Associates, 2007; Royal College of Psychiatrists, 2006). One of the difficulties for younger people developing dementia is obtaining a definite diagnosis. As dementia is expected in older people, many general practitioners do not look for the condition in the younger age group (Haase, 2005; Werner, Stein-Shvachman, & Korczyn, 2009). This can lead in a delay of referrals to diagnostic services; referrals are often made to a wide range of services such as neurology or older person’s mental health services. Therefore, gaining diagnosis can take months, even years creating stress and uncertainty for all concerned (Harvey, SkeltonRobinson, & Rossor, 2003). When a person under 65 years is diagnosed with dementia the impact on their family can be significant. When a parent develops dementia, children experience losses (Armstrong, 2003), as the affected parent can no longer guide or care for them. Children can also loose the other parent to caring, and often they, themselves undertake a parenting role for younger siblings (Haase, 2005). This can be compounded by the potential risk of developing the same condition as often; there is a genetic component to the disease (Filley et al., 2007; Werner et al., 2009). Parents of YPWD may experience feelings of

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guilt in the sense that the dementia should have affected them becoming distressed at having to watch their child face a disease that is normally associated with older age (Jubb, Pollard, & Chaston, 2003). The issue of employment further complicates the situation for YPWD. They are more likely to be in work at the time of diagnosis, having heavy financial commitments, such as mortgages. Before a diagnosis is made and particularly if it is delayed, people are often put under great pressure to improve their work and then dismissed in the absence of the demanded improvement (Jubb et al., 2003). Early retirement may then impact upon pension entitlements. Partners struggle to cope with employment in addition to the demands of caring (Armstrong, 2003). Eventually they may give up work to care full time, creating additional financial pressure. Eventually, when a diagnosis has been made and the YPWD requires access to service provision the matter of funding has to be organised. Often there is uncertainty by funding agencies and service providers as to who has responsibility for this age group (Williams, Cameron, & Dearden, 2001). Ultimately, when funding has been arranged there is limited choice of service provision due to the current lack of age appropriate services. This can be compounded by the notion held by service providers that one approach to provision fits all. YPWD face an inverse ageism as there are few specialist services catering for their needs. They are usually referred to services for older people (Alzheimer’s Australia, 2007; Haase, 2005). Accessing services for older people can be problematic for a number of reasons. YPWD are more likely to be physically fitter than older people and more likely to be sexually active. In general their interests may not be the same as the older people around them and they often identify more closely with staff (Haase, 2005; National Audit Office, 2007). A lack of appropriate services and interventions can cause distress for


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both YPWD and their families. This can lead to permanent admission to facilities not designed for their specific needs, possibly resulting in a faster decline in their conditions. This situation needs to change urgently and their unique needs attended to. My particular interest in this subject stems from both personal and professional experiences. One particular incident early in my nursing career made me question if there was a need for specific services for YPWD. As a community mental health nurse, I had to admit a 30-year-old woman with dementia for respite care. The only facility available to accept her admission was an older person’s mental health ward where she looked out of place, mixing with elderly people. Staff found it difficult to accept that she was a client; many initially thought she was a visitor staying with a parent. Over a period of time her behaviour deteriorated, she became increasingly frustrated by her situation to the extent her behaviour escalated into both physical and verbal aggression. For me this highlighted a gap in service provision. In order to determine appropriate healthcare settings for this group of people the following question ‘are specialised services for younger people with dementia more effective than generalised services? ’ is to be addressed in this review of the literature.

SEARCH STRATEGY To commence the search for relevant literature the terms ‘young onset dementia’ and ‘service provision’ were broken down into key words along with synonyms and related terms within components. Deversen (2005) used the New Zealand Oxford Thesaurus in the search for key words which were identified as: early onset dementia, YPWD, working age dementia, service development, nursing, age-appropriate services and dedicated services. These words were then used separately and in combination. With the key words identified, literature was gathered from a number of databases; 132

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PsycARTICLES, PsycEXTRA, PsycINFO, CINAHL, Medline, The Cochrane database of Systematic Reviews, ProQuest, Health Source and Web of Knowledge. Several internet web sites were also searched to access Health Departments and professional psychiatric organisations. A hand search was also conducted incorporating the following publications: Journal of Advanced Nursing, Nursing Times, Nursing Standard, Journal of Gerontological Nursing and Journal of Dementia Care. Studies that were published between January 2001 and to December 2008 were chosen for inclusion. All studies and literature articles that matched the key word search terms published in the English language were included. Qualitative reviews, letters, comments, information leaflets, editorials, book chapters and conference proceedings were excluded. Seventy-four studies were found but after applying the exclusion criteria 19 studies were included in this review. To further the exploration of the literature a modified form of content analysis identified recurring themes throughout the literature (Polit & Beck, 2008). An analytical table was then constructed according to the information required from the articles. A colleague acted as a co-coder in order to test the validity of the author’s findings. The main themes and trends from the literature were collected for further review, comparison and analysis. Two main themes were identified within the literature: 1. Age appropriate services that are responsive and flexible 2. The absence of a single entry point into services and the necessity of a care pathway for this group of people. The categories are used as sub-headings for the completion of the literature review, analysis and synthesis. The order of discussion does not prioritise the categories but follows a common progression in the literature.

Exploring the service needs of younger people with dementia Age appropriate services that are responsive and flexible The Alzheimer’s Society (2001) states that there is a higher prevalence of the rarer dementias in younger people (Harvey et al., 2003) and for that reason services need to have appropriately trained staff with experience to work with the different needs presented by the whole range of dementias. The Alzheimer’s Society (2001) also point out the very different emotional, financial and social pressures impacting on the younger person developing a dementia and their family and carers. The different range of dementias in younger people exacerbates the problems of them being fitted into services designed around the perceived needs of older people with dementia (Alzheimer’s Society, 2005; Daker-White, Beattie, Means, & Gilliard, 2002; Royal College of Psychiatrists, 2006; Williams et al., 2001). An argument also made by Harvey et al. (2003) as they refer to evidence of higher rates of depression, anxiety, delusions and aggression within YPWD than is reported in older people. This creates problems in both the emotional impact and risk to the younger person, and the physical risk to cognitively impaired older people with a fellow service user who is physically more able and robust. Equally placing a younger cognitively impaired person in a residential establishment with people of a similar age but who are cognitively intact places the cognitively impaired person at risk of emotional and physical abuse from others reacting to behaviours associated to the impairments. These factors suggest that there is a need to develop and commission age and need appropriate services. The Australian Alzheimer’s Society report states that prior to the deinstitutionalisation process YPWD would have been cared for by a psychiatrist in an institution. They continue to explain that as a consequence of that process dementia care is now provided by a range of professions. The Royal College of Psychiatrists (2006) agree with this view, stating that the allocation of responsibility for YPWD in the United Kingdom (UK) has traditionally been haphazard and this

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has resulted in YPWD being excluded from a range of services. This has distressing implications for both YPWD and their families. Consequently YPWD have been cared for in a variety of settings (Alzheimer’s Society, 2005), often being looked after by their families unsupported in the community (Royal College of Psychiatrists, 2006). This has created a feeling among many YPWD and their families, that they are pushed from service to service and are a marginalised group (Chaston, Pollard, & Jubb, 2004; Williams et al., 2001). Younger people with dementia as less likely than their older counter parts to have co-existing major illnesses and be experiencing profuse sensory changes, so in general are healthier and fitter (Jubb et al., 2003). The implication is that when YPWD feel frustrated the anger displayed is often more difficult to control. If this is the case, YPWD require specialist and distinct services with staff that are aware and trained to meet the unique needs of the YPWD. In 2005, the Alzheimer’s Society looked at the development of services for YPWD across the United Kingdom. Based upon local areas of good practice it recommended that the needs of YPWD require an individualised approach and that they should be viewed as a distinct group (Alzheimer’s Society, 2005). This would necessitate the provision of specialist service rather than utilising the traditional dementia services set-up for older people (Royal College of Psychiatrists, 2006). These recommendations have been highlighted in a policy document from the National Institute of Health and Clinical Excellence (NICE, 2007). In this report a body of senior systematic reviewers analysed all the available evidence relating to dementia and following the review, a policy was developed. The literature reviewed reiterated the view that YPWD have specialised requirements, and dedicated multidisciplinary services should be developed, allied to existing dementia services, to meet their needs for assessment, diagnosis and care (NICE, 2007).


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This view is not shared by all however, Reed, Cantley, Clarke, and Stanley (2002) undertook a study that interviewed 22 YPWD and the results did not reach the same conclusion. They acknowledge the differences between younger and older people with dementia, but argue that services should not be age specific just responsive to individual needs. The study was limited to one dedicated YPWD service in the United Kingdom. It is possible that the YPWD did not make comparisons with services for older people as they had not entered into such a service as a client, and therefore had no experiences to draw upon. Another factor that may have influenced the responses of the YPWD was that their ages were near to the entry point of old age services. It would be interesting to replicate the study with people in their 30s or 40s being interviewed. As the interviews are about responsiveness to individuals rather than age specific needs, the authors conclude that service providers could profitably focus on developing services that are responsive to individual needs. Coombes, Colligan, and Keenan (2004) do not concur with the view held by Reed et al. (2002), and in their study asked both YPWD and their carers their views regarding the specialist service they attended. One-to-one interviews were carried out with YPWD whilst focus groups were held to elicit the views of carers. All participants supported the development and continuation of specialist services as they wished to mix with their peer group who shared similar interests and were at a similar life stage. In their study Daker-White et al. (2002) undertook a comprehensive literature review and found there was little in the way of empirical work available. They found that the main recommendation in the literature specified that age-appropriate services should be developed. They conducted a postal survey that was sent to service providers. Respondents were divided as to whether the needs of YPWD were best served via specialist or generic provision. Eighteen (51.4%) respondents thought that specialist services were necessitated 134

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by the special needs of this group as they do not fit into older persons services. Nine (25.7) people felt that generic service provision was the only practical way to provide services given the small numbers of YPWD in their catchments areas. The dilemma here is that the views of service providers and commissioners of service who look at critical mass to fund service provision conflict with the views and needs of YPWD. It is possible that they are considering the use of traditional service provision, whereas services for YPWD do not have to cost large sums of money and can be provided in innovative and creative delivery methods. For example the use of Alzheimer’s Cafés where both YPWD and their families can meet to gain support from one another. (Chaston et al., 2004; Jubb et al. 2003). In Daker-White et al. (2002) study YPWD was also interviewed. The respondent’s ages ranged from 41 to 66 years. The majority of those respondents wanted to mix with people their own age. Nine respondents (64%) already received an age specific dedicated service. They expressed an overwhelming desire for purposeful activities that matched their level of fitness and capabilities. Haase (2005) undertook a study on behalf of the Alzheimer’s Society of Ireland involving 61 YPWD. The most significant emergent issue was the need for flexible care arrangements. Many improvements are required such as help at home, day care, along with respite and residential care. Recommendations include a sustainable set of care arrangements that respects the wishes of the YPWD and their family. The issue of flexible care arrangements was discussed in Williams et al. (2001) study. They identified of cases of young onset dementia from health and social care records. In the absence of a central register a comprehensive survey was undertaken of the individuals and organisations likely to be involved in the provision of health and social services. The study also consisted of a postal survey of carers and semi-structured interviews with patients, carers and professionals from health and social services and the voluntary sector.

Exploring the service needs of younger people with dementia They found that almost all of the patients (92%; 103/112) were under the care of a psychiatrist and most were currently with the consultant with a special interest in young onset dementia (78%; 87/112). Nearly 40% (45/112) of patients had been referred to day care and almost all had been referred to the Alzheimer’s Society’s day centre for people with young onset dementia. There was evidence that those attending the day centre tended to present with relatively less severe behavioural problems and required relatively less help with activities of daily living than non-attendees who lived at home. Residential respite care had been provided for 14% of sufferers in a variety of settings – hospital wards for the elderly, general adult psychiatry wards and private sector residential and nursing homes. While such residential respite care was appreciated, there were criticisms of the care being located in inappropriate environments for YPWD. Carers also commented on the difficulties they experienced in finding appropriate homes for permanent care. Carers in this study frequently mentioned that their greatest need was a break from caring, and their highest service priority was appropriate day care (Williams et al., 2001). Parahoo, Campbell, and Scoltock (2007) undertook a study on the use of domiciliary respire services and used a qualitative approach in their study interviewing eight carers. Their partners with dementia were not consulted. Carers were specifically asked about domiciliary respite and the services they received. Predominately the range of activities related to lifting, bathing and personal hygiene, generally making the younger person as comfortable as possible. Therapeutic activities which were briefly mentioned included: working in the garden and playing games. The main one issue that the carers did identify was that domiciliary respite has the potential to delay institutional respite. This was also acknowledged by Bentham and La Fontaine in their 2005 study. Their work is based on both developing and working in a

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dedicated working age dementia service. After consulting with both YPWD and their partners they found that both parties want to be involved in service development, and that any service provision should be flexible and meet both the needs of the person and the family. An important aspect for a person of working age with dementia, their family members and supporters, is that they require very different information, support and service needs to the majority of people with dementia. This includes access to age appropriate support and to information about benefits, pensions and employment rights. There are also very clear information needs as to the implications of a diagnosis of dementia in relation to insurance, mortgages, financial credit, as well as the impact on life plans including financial management and advance directives (Bentham & La Fontaine, 2005). Despite the literature suggesting that dedicated services for YWPD are the way forward their development is still patchy (Alzheimer’s Society, 2005). This in part may be attributed to the fact that staff lack adequate knowledge and training to recognise and treat these disorders (Werner et al., 2009). For the YPWD this can delay diagnosis, often with the affected person falling through the net of healthcare. This leads into the second theme that emerged from the literature.

The absence of a single entry point into services and a care pathway for YPWD Care pathways (also known as clinical pathways, integrated care pathways and various other terms) basically describe the route that a patient will take from their first contact with a health care professional to the completion of their treatment. In essence they are care plans that detail the essential steps in patient care with a view to describing the expected progress of the patient. It has been suggested that use of care pathways reduces the cost of care and the length of patient stay in hospital. They also have a positive impact


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on outcomes, such as increased quality of care and patient satisfaction, improved continuity of information, and patient education (Renholm, Leino-Kilpi, & Suominen, 2002). They cover the care information and investigations and interventions to be performed as well as directing the client to the most appropriate professional to assist. Additionally they provide criteria for referral to other agencies and seamless transition between organisations. Beattie, Daker-White, Gilliard, and Means (2004) found in their study that diagnosing dementia in younger people raises complex issues. The literature suggested that the reasons for this are the failure of the general practitioner to recognise signs and symptoms of dementia in the younger person. In interviews held with fourteen YPWD a common theme was the time it took to receive a diagnosis as well as the manner in which it was given. In a similar study respondents describe the diagnostic process as protracted and torturous with diagnosis taking between two and eight years (Daker-White et al., 2002). Bentham and La Fontaine (2005) are clear that the benefits of early diagnosis particularly with young onset dementia are crucial and the impact of the condition upon those affected and their families may be devastating. There is then a clear need for early diagnosis to be matched by early access to services. Even when diagnosis is made, entry into services brings its own complications. Williams et al. (2001) explored the route to services and found it was often uncoordinated with multiple referrals making YPWD feel that they were moving from pillar to post. Over 38 variations of care pathways were identified, predominately referrals between neurology and psychiatry. Most YPWD had been referred to at least two different consultants and a significant minority had been referred to as many as five different consultants. Despite having a dedicated young onset service very few people were referred directly to them. Carers complained about being passed from consultant to consultant and that they had not received 136

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enough information, practical help, support or counselling. They felt that the burden of responsibility for finding out about available help was left with the carers and their families. In conclusion, Williams et al. (2001) recommend the development of a single gateway to which YPWD can access diagnosis information expertise and appropriate care. The authors suggested the development of a multi disciplinary diagnostic service to reduce the length of time from first referral to diagnosis and aftercare. Jubb et al. (2003) also discovered that in their local area there was not a single central entry point for referrals to be sent to, no defined care pathway to navigate for either YPWD or professionals to navigate, and a general lack of awareness that dementia even occurred in younger people. The Alzheimer’s Society (2005) agree that it is not just the establishment of a consistent structure for referral and service provision but training, publicity and raising awareness of the needs of YPWD are also essential in the creation of a successful care pathway. Dementia North is an organisation based in the United Kingdom that offers support to professional organisations who work with people with dementia and their carers. A primary function of the organisation is to provide is to carry out research into service provision and undertake service evaluation. They cover a population of six million, of which comprises of both urban and rural areas; there is a dedicated YPWD service within the catchment area. In a regional survey carried out by Dementia North, it was discovered that there was no direct route into the YPWD service. They recommended that a central national policy was developed so that YPWD needs are met. This view is supported by the Alzheimer’s Society (2005), who proposes that agencies develop clear pathways through care and they have lobbied the United Kingdom government on this issue. They suggest that services should appoint an individual who takes responsibility for this group of people, a view shared by the Royal College of Psychiatrists

Exploring the service needs of younger people with dementia who specify that a lead clinician should act as a focus for referrals in addition to a lead person with responsibility for the planning of services. Equally they recognise the importance of improved liaison between services such as old age psychiatry and neurology (Royal College of Psychiatrists, 2006). The introduction of care pathways would allow for common standards in client care, a fact which is highlighted by Saad (2004). Saad discusses the need for specific cognitive tests and physical investigations to be carried out to ensure speedy access to specialist services; thus reducing duplication and providing a coordinated collaborative approach. The development of care pathways for YPWD would ensure the provision of a fair and equitable service and would allow for measurement in any variation of care. Since YPWD people with dementia have unique needs they require skilled multidisciplinary team assessment and service provision.

DISCUSSION AND RECOMMENDATIONS It has become apparent that the literature reviewed predominately bases its findings upon the experiences of professionals and carers. There is an apparent lack of empirical studies, which means that the current evidence is ranked at the low levels within research hierarchies. This highlights the need for more substantial research. The recommendations regarding dementia services for younger people are also based upon practical experiences of professional and paid carers, rather than scientific evidence (Beattie et al., 2002), and the views of the consumers need to be sought. There appears to be a profusion of literature from the United Kingdom but there is a need for research to support the needs of YPWD in the New Zealand context. There is an emerging consensus that people with dementia should be involved in the planning of services (Cantley, Woodhouse, & Smith, 2005), but it is evident that the voice of the YPWD is missing from most of the

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literature and it is imperative they are involved (Beattie et al., 2002). The over arching message was that the views of YPWD must be sought and they must be included in process of planning and evaluation of services. Chaston et al. (2004) in their work illustrate the establishment of a dedicated service that was developed in partnership with YPWD. They discuss a proactive approach that worked towards improving the awareness of younger onset dementia and how facilitators from the service empowered the younger clients to participate in the planning and funding of the service. Nevertheless, the majority of studies demonstrate that health systems are excluding a group of individuals from receiving appropriate services. Everyone, irrespective of their age, should be entitled to quality support and services that meet all their needs but there is disparity in the provision of services for this group of people. They have become marginalised, and their special needs require appropriate case coordination and service provision (Williams et al., 2001). In studies where the views of YPWD and their carers have been sought, they have made it clear that the issues of early diagnosis, early information about dementia, what services are available, and how to access those services are important to them. The introduction of a specific care pathway would provide equity, enhance quality and the consistency of care for the YPWD. For YPWD those outcomes are also achieved through the process of timely delivery of such information, diagnosis, assessment and services. Both YPWD and their carers express a desire to be seen by professionals with expertise in the area (Alzheimer’s Society, 2005; Jubb et al., 2003). The introduction of a lead clinician to act as a focus for referrals is achievable target for service providers; it would also assist in the speeding up of the diagnostic process whist not incurring vast sums of money. Many of the services described in the studies have been developed in an innovative way, often adapting existing service provision to


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reflect the needs of YPWD (Alzheimer’s Society, 2005; Chaston et al., 2004; Jubb et al., 2003). It is suggested that the relaxed atmosphere of a cafe set-up breaks down taboos and gives people the important feelings of belonging, acceptance, acknowledgement and recognition (Miesen & Jones, 2004). The Alzheimer’s cafe is an informal way for YPWD to make contact with each other, to receive a consultation and feel at home (Jubb et al., 2003). YPWD and their families need to socialise, gain support from others of a similar age and to exchange experiences. In countries such as New Zealand where the population is small and there are remote rural areas, cost effective innovative ways of service provision need to be developed. The use of consumer directed care arrangements that enable people to determine the type of care and provider could assist YPWD in rural areas. Commissioners of services could be tempted to base developments for YPWD on care models that do not account for time, distance and transport required to access services in a centralised area. For example, day care provision is often inflexible with transport collection effectively reducing time to 10:00 am–3:00 pm provision (Parahoo et al., 2007). This poses a problem for a working partner who would benefit from a more flexible service. The provision of early morning, night time and weekend service would allow partners to continue to work and have time for their selves. The utilisation of outreach workers can take services to the location of the YPWD (Innes, Balckstock, Mason, Smith, & Cox, 2005; Jubb et al., 2003).

CONCLUSION There has been a suggestion in the literature that individualised care and flexible service provision should be available to people with dementia of all ages. However, this small number of publications still highlight that YPWD require careful consideration and go to great lengths to describe the unique needs of this group of 138

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people. Presently the majority of evidence from the literature supports the view that younger people have different needs from older people with dementia. Subsequently their demands for care and services are correspondingly different. This review has demonstrated that the voice of the younger person with dementia needs to be included in any further research. By gaining the views of this consumer group, we will gain clearer insight into what services are best for them.

ACKNOWLEDGEMENTS I wish to acknowledge the support and guidance given to me from Dr Karen McBride-Henry who was my supervisor during the writing of this literature review. I also wish to thank Dr Marian Bland for all her support and encouragement.

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Accepted 03 April 2011


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