Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom: Results of an online survey

Although literature on postdiagnostic support for people affected by young onset dementia acknowledges financial concerns, this topic has remained underresearched. The aim of this study was to explore the financial impact of a diagnosis of young onset dementia on individuals and families. An online survey, comprising binary yes/ no, multiple- response and open- ended questions, was codesigned


| INTRODUC TI ON AND BACKG ROUND
In the United Kingdom, an estimated 42,500 people have been diagnosed with young onset dementia (age at diagnosis < 65; Prince et al., 2014), predicted to rise to 50,400 by 2025 (Carter et al., 2018).
Contributing factors include a greater likelihood of rare dementias (Harding et al., 2018), which cause a range of different symptoms and consequently unpredictable illness progression in younger onset (Kilarski et al., 2015). An unexpected diagnosis received 'out of time' (Greenwood & Smith, 2016) and premature loss of employment and income present a significant challenge to many because of age (Cations et al., 2017;Gibson et al., 2014;Stamou et al., 2020). Literature acknowledges financial impact (Galvin et al., 2017;Johannessen & Möller, 2013;Kochovska et al., 2018;Roach & Drummond, 2014), but research on this topic is lacking (Wheeler et al., 2015).
People diagnosed with other progressive neurodegenerative conditions such as Parkinson's or Huntington's disease also lose income when no longer able to work. However, unlike those living with young onset dementia, the postdiagnostic health care and support needs arising from these conditions are largely met by specialist services through professionals such as Parkinson's nurses, for example.
Parkinson's nurses work in the community and in hospitals and are employed by the NHS and in coordinated multidisciplinary support (Parkinson's UK, 2020; The Huntingdon's Disease Association, 2020; Huntingdon's Disease Association UK, 2020). Equivalent systems of support, working across health and social care that are available to people living with Parkinson's Disease and Huntington's Disease, are not available to people living with young onset dementia, although the condition is as irreversible and progressive as Parkinson's or Huntington's (Draper et al., 2016). People diagnosed with young onset dementia do however remain under the care of a general practitioner or consultant to monitor medication.

| Assessment options, processes and procedures
Assessment options for support and related application processes are sometimes poorly understood by those enquiring about postdiagnostic support. There is little awareness that support for families affected by young onset dementia is assessed separately from the needs of the person diagnosed with the condition.  Government, 2020). Claims are assessed in relation to daily living, for example, the ability to prepare or eat food, personal care, managing medication, financial decision making and mobility.
b. Needs assessments: Needs assessments are also referred to as care needs assessments and/or social care assessments. Needs assessments are for adults (18 years of age and above) who may require help (Carers UK, 2020). These assessments are carried out by social care professionals in relation to criteria of daily living.
c. Carer's assessment: Carers' assessments can be undertaken independently from needs assessments. A person in need of care may refuse to have a needs assessment carried out. The carer, however, may still need support and is entitled to it from their local authority under the Care Act 2014 but may not qualify if they are in receipt of another benefit. Both the needs and carer's assessment aim to establish the type of help required and to design what is referred to as a care package to support independent living. These assessments precede Social Care Financial Assessments.
d. Social care financial assessment: Once a care package has been proposed, households will be assessed and means tested to establish the financial contribution a family will need to make to receive such care.
e. NHS continuing health care: 'Some people with long-term complex health needs qualify for free social care arranged and funded solely by the NHS. This is known as NHS continuing health care' (NHS England Continuing Healthcare, 2020). Eligibility for NHS continuing health care is determined via assessment by a team of health care professionals.

What this paper adds:
• The combination of living with a progressive illness and requiring care that falls outside the remit of the NHS is adding avoidable pressures and anxieties to families.
• Assessment processes are perceived to be complex and confusing and require expert assistance to navigate.
• The triple effect of income losses, depleted savings and unexpected care costs creates a ripple effect and anxieties around how to afford life now and how to pay for care in the future.
A person newly diagnosed with young onset dementia is, in most cases, not aware of any of these options . To understand the implications of reduced household income, and what it means not being able to navigate financial support whilst coping with a terminal condition, we undertook a survey that explored the financial impact of a diagnosis of young onset dementia on individuals and their families.

| ME THODS
There is no national dataset for people living with young onset dementia that can be used as a sampling frame. To include as many people as possible and to achieve broad representation from across the United Kingdom, we designed an online survey to capture topic relevant information and respondents' basic demographic details. The survey questionnaire was developed in discussion with eight experts by experience who are members of an Alzheimer's support group for younger people with dementia and their caregivers/carers. The information sheet, which formed part of the questionnaire, stated the title of the study and explained its aims. Consent to participate in the study was We posted a reminder on Twitter, encouraged 'Followers' to take part in the study and asked them to forward the URL to the survey to their networks. The information sheet invited potential participants to contact us should they prefer paper copies. In the absence of a sampling frame, we did not have an expected/estimated response rate. Ethics approval for this study was granted by the University's Research Ethics Committee (Reference HSK/SF/UH/03799).

| Data analysis quantitative
Completed surveys were downloaded from Online Surveys™.
Quantitative analyses reflected the questions asked and were performed using descriptive statistics. As all data were categorical, associations between potential explanatory factors and types of financial impact were investigated using the chi-squared test and Fisher's exact test; analyses were performed using SPSS v26 (IBM-Corp, 2019).

| Data analysis qualitative
Although the survey provided 1,000 characters for answers per open-ended question, respondents provided only brief statements, if any at all. There were no data to be transcribed. The statements provided were grouped and coded manually per research question, for example, how the financial impact arose and what the consequences of this were for participants and/or their families.
Representative quotes are reported verbatim per emerging theme, for example, the financial impact of care costs, the complexity of assessment processes and consequences for families and intergenerational households.

| Public involvement in the study
We attempted to obtain feedback (Mathie et al., 2018) on the findings from the Alzheimer's support group who helped develop the survey questionnaire. Due to Covid restrictions, the group no longer met. We contacted the Alzheimer's Society dementia support worker, who had worked with the group over a number of years, and had facilitated the development of the survey questionnaire, to provide feedback on our findings, based on her knowledge of the group and our previous discussions during questionnaire development. This feedback helped to set out and clarify the different types of assessments (discussed in the previous section) that respondents did not differentiate between when reporting on the types of support sought.

| FINDING S
The survey yielded a total of 61 responses. Fifty-eight questionnaires were completed online, three on paper. Several returns were not usable due to lacking age-related information (n = 1), a diagnosis having been made aged > 65 years (n = 1) and blank returns (n = 4).
This resulted in 55 valid responses.

| Sample characteristics
Survey responses were received from England (n = 47), Northern Ireland (n = 1), North Wales (n = 1) and Scotland (n = 6). Of the 55 respondents, 35 were male and 20 were female. All but one respondent spoke English as their first language. Age at diagnosis ranged from 45 to 64 years (Table 1). Table 2 reflects the respondents' self-reported stage of dementia. They were asked to choose one of four options (early, middle stage, more advanced and don't know). Findings suggest that participants were approximately equally spread across the different stages.
Of the 55 respondents, 71% (n = 39) received assistance when completing the survey. Respondents who completed the survey on their own (n = 16) reported being in the early stages (n = 11) or middle stages (n = 5) of dementia. Four respondents in total were unsure which stage they were at. The main types of dementia respondents had been diagnosed with were Alzheimer's disease (n = 16), posterior cortical atrophy (n = 15) and fronto temporal dementia (n = 9).

| Care costs
Care costs were more often identified by those who had required assistance in completing the questionnaire, older participants at diagnosis and current age and those reporting an advanced stage of dementia. Statistically significant associations between care costs and participants' demographic characteristics are shown in Table 3. Table 3 are based on the question: 'How did the financial impact arise'? The options were (a) loss of income, (b) care costs, (c) increased transport costs, (d) other (please describe). Please tick as many options as apply. This question did not ask participants to specify care costs by type. However, although respondents in the early stages of dementia had enquired primarily about support for costs such as respite care, day care and carer support, cost items in the more advanced stages of dementia included a night-sitter (ID 27), admiral nursing (ID16), incontinence care (ID53), nursing home care (ID5; ID10) and costs for specific support such as a wheelchair (ID11).

Findings presented in
The following section reports respondents' statements made in reply to specific questions on the financial consequences of a diagnosis of young onset dementia, the variety of support needs, support seeking and help to cover care costs. Emerging themes were the impact across three generations and emotional impact and distress.
Anonymous respondent quotes are included with ID numbers.

| Financial consequences of a diagnosis of young onset dementia
In most cases, loss of income was a direct consequence of a diagnosis of young onset dementia as people retire usually prematurely. However, respondents lost not only their incomes but also the ability to make further contributions to pension funds. A male participant explained: '… I had to retire on medical grounds, lost a good wage and the ability to continue paying into a pension' (ID60). One respondent, diagnosed at the age of 53, stated that he had to give up work but still had a mortgage to pay. He too lost the ability to contribute to his private pension (ID42). In some cases, people experienced a loss of two incomes (and associated pensions) when a spouse gave up their paid job to care. On average it takes about 4.5 years from early symptoms to receiving a formal diagnosis (Draper et al., 2016;van Vliet et al., 2013

| The variety of support needs
The variety of support needs as determined by illness progression is reflected by the enquiries made. Of the 55 respondents, 51 (93%) described their support seeking activities. Of these, 42 (82%) identified the need for assistance to cover medical costs, transport costs and other family expenses. Examples included personal care such as '… someone to help my wife to shower and dress me' (ID10) as this demands much physical strength, and help with taking medication (ID18).
Other respondents described the unpredictability of whether they would be assessed as eligible for financial support to live independently. They described situations where services failed to understand how living with young onset affected their activities of daily living. One participant who applied for PIP and carers allowance explained '… initially I was refused PIP, but we reapplied a year later and attended assessment with an Admiral nurse who was able to confirm what we were saying, and PIP is now issued' (ID20). Another respondent received disability living allowance (DLA) and employment and support allowance (ESA) on appeal (ID43). Both types of support can be claimed via the Department for Work and Pensions.
One female respondent, diagnosed with posterior cortical atrophy (PCA) in 2013 at the age of 51, explained that when the condition progressed: '… we applied for a specialist wheelchair to cope with my complex postural needs. The NHS wheelchair service refused unless my husband could guarantee that I would be taken out in it at least three times a week' (ID11). The family had to purchase the wheelchair privately because this could not be guaranteed. In contrast, one respondent received a grant for house-adaptations and was able to '… install tracking hoists and a wet-room. Equipment is on long-term loan' (ID13).
These examples highlight variation in assessing eligibility for support.

| Assessment options and processes: Complexity and confusion and the voluntary sector
Respondents described how they had been unsure of whom to contact, and their lack of experience in distinguishing between the ben- Overall, learning about support options, applying for financial support and getting accurate assessments were perceived as very challenging. The Alzheimer's Society dementia support worker pointed out that making a claim for PIP is often perceived as a complicated process. Claimants feel that forms with tick-boxes do not convey their situation fully or adequately. In contrast, face-to-face and/or telephone assessments ask very specific questions, which claimants are not always prepared for. Other problems associated with assessments include failures to obtain relevant information from other key agencies involved with an individual's situation, and/ or information about an assessor's recommendations for a care package being rejected by a social care panel.

| Financial impact of care costs
The threat of losing their home due to having to pay for care costs was a constant worry for some. As one respondent reported: '… the house had to be sold to pay for care as all savings have been depleted' (ID5). A person diagnosed at the age of 50 stated: '… we are selling our house and downsizing to pay off loans that have accumulated' (ID25).
One person who had to move to a care home said: '… apart from PIP I get no support and my savings are quickly depleting. We let the family home to pay towards the fees, but even the rental income from a fourbedroom house only covers about a quarter of the monthly fees' (ID24).
One person in the advanced stages of dementia remarked: '… having been awarded Continuing Health Care alleviated the stress' (ID27).

| Consequences for entire families and intergenerational households
Twenty-five of the 55 respondents (45%) indicated that the financial impact of young onset dementia affected not only those living in the same household but also adult children and relatives. One respondent stated: '… my husband and I both worked full time for a total of 85 years. We are spending our savings on care, there will be nothing left to pass on to our children' (ID15). Another respondent reported: '… we had our son and grandson living with us who had to move out straight away as housing benefit meant they became the sole person responsible for all the bills like full rent/council tax, and our claim was unable to proceed if they remained living with us … they could not afford all those bills in our house so they had to find somewhere else to live' (ID22). Along similar lines, a further respondent commented: '… my daughter who lives with me now has to pick up the cost of heating and council tax' (ID9). The financial impact of young onset dementia affected not only adult children but also parents.
As one respondent reported: '… parents from both side of the family travel 150 miles and 80 miles respectively on alternate weeks to provide 2-3 days additional support' (ID 11). In addition to financial and generational impact respondents also described emotional consequences.

| Emotional consequences of financial impact
Respondents indicated that the main reasons for anxiety, worry and depression related to finances, highlighting that they:  These issues were exacerbated by a reported lack of information on various assessments options and on expert advice to secure financial support . Various support mechanisms are available, but the dominant message was one of confusion as to which benefit or support for care can be applied for, which authority, department, agency or charity to approach and which processes to follow. This lack of information and knowledge was compounded by assessors who did not understand respondents' situation and applied benefit rules that reduced rather than optimised available family support.

| D ISCUSS I ON
At the time when needs and carers assessments are carried out families are usually unaware of the contributions which they will need to make toward their care package if it is approved. If, following the social care financial assessment, this amount turns out to be too high, individuals and families may have to decline the support that is being offered. Research on social care funding (Bottery, 2019;Jarrett, 2019) and an investigation into means-testing in adult social care (Mayhew, 2017) has begun to address some underlying issues at the systems level.
The difficulties of navigating the benefit system are well documented (Woolham et al., 2017). However, for those living with a terminal condition, having to negotiate such complexities is an enormous burden. Findings hint that some of the experiences described are not inevitable. Some respondents were supported with the different assessment processes and achieved successful application outcomes.
Defining dementia as a social care issue had a major impact on eligibility. Financial loss was characterised by ongoing uncertainty, and the undocumented financial costs on the wider family were significant. There was evidence that this can be avoided, but at the moment who does and does not get help seems arbitrary.

| Strengths and limitations of the study
This study was limited by its small sample size. People diagnosed with young onset dementia are a geographically scattered population and most studies rely on small groups who are already meeting.
Data on educational background, marital status or ethnicity could have been collected, but during questionnaire development the priority was to keep the survey manageable. Seventy-one percent of respondents received assistance when completing the survey, which could be seen as a limitation. Although findings are not generalisable, respondents' statements add depth to our understanding of the financial and emotional impact a diagnosis of young onset dementia can have across three generations.

| Conclusion and recommendations
To our knowledge, this is the first study that has focused on the financial impact a diagnosis of young onset dementia can have on individuals and families. The combination of living with a progressive and terminal illness and requiring care that falls outside the remit of the NHS adds avoidable pressures and anxieties to families. Future studies need to test different interventions that are likely to improve the awareness of, and access to, financial information and support over time.

ACK N OWLED G EM ENTS
This study was conceptualised 3 years ago in discussion with a former Alzheimer's Society Research Network Coordinator who shared his concerns about the financial impact of young onset dementia on individuals and families. We would like to thank the experts by experience team of the Alzheimer's support group who offered much insight and gave freely of their time. Many thanks to the Alzheimer's Society member of staff for facilitating the entire process from the first group session to developing the questionnaire, for remaining so committed and for contributing valuable insights to this paper. Without their support this study would not have been possible. We would also like to thank individuals and organisations who offered to host the survey on their website and helped to disseminate the survey more widely: Kingston and St George's University of London; The Royal College of Psychiatrists; YoungDementia UK; Rare Dementia Support Groups, and the many Facebook groups and unnamed charities referred to by our respondents.

AUTH O R CO NTR I B UTI O N S
All authors made substantial contributions to this paper.