Early diagnosis of dementia is highly desirable, but people affected by the condition are often left to flounder without sufficient information about the implications. Qutub Jamali and colleagues discuss their study, which calls for more dementia education for both public and professionals.
Timely detection and diagnosis of dementia will prevent crises, facilitate adjustment and provide access to treatments and support. So, an early diagnosis can be beneficial for the patient and their family by helping them acquire a better understanding of the condition, manage symptoms early, find community support, and plan for future decisions and care.
Despite this, extensive research has revealed that patients diagnosed with dementia and their families are not provided with adequate information, leaving them unsure about the prognosis and where to turn for support and when to consider home care (Stokes et al 2015). They are left in need of overall information regarding support, treatment options, resources and possible legal or financial issues.
Consequently, people may be confused about the future and feel obliged to depend on their own beliefs and experience (Stokes et al 2015). Major factors contributing to this confusion include the limited time given to explaining the diagnosis to patients and their families by mental health professionals and the use of non-specific terminology such as memory impairment instead of medical terms such as dementia or Alzheimer’s disease (Stokes et al 2015).
Following diagnosis different concerns are raised by patients and their families. Many patients have expressed fear of turning into another person with a different character (eg, “being aggressive”) (Wolff et al 2014). Patients may be anxious about the prognosis and what the diagnosis means to them, as well as deeper concerns about their capability and the potential to require nursing care (Wolff et al 2014).
In addition, patients may worry about forgetting new information and the possible side effects of medication. Family concerns have focused mainly on patient non-acceptance of the diagnosis and the overall presentation of dementia, and relatives may also have a lot of questions about their role in providing care (Wolff et al 2014).
Against the backdrop of this widespread need for reliable information about dementia, we conducted a qualitative study to understand the level of dementia awareness among the public and clinicians from a non-mental health background in Lancashire. Among other things, we wanted to probe the positives and negatives of a dementia diagnosis as people perceived them.
Our questionnaire link for the public was circulated online on Facebook and was designed in such a way that it was easy to understand as well as addressing the objectives of the study. It was aimed at friends and family of people diagnosed with dementia – but not people with dementia themselves – as well as the wider Lancashire public in all age groups.
A link for our second questionnaire, for non-mental health professionals working in Lancashire and South Cumbria NHS Foundation Trust (LSCFT), was sent via work email addresses and the Trust newsletter. These non-mental health professionals included doctors, nurses, dieticians, physiotherapists and occupational therapists.
The public questionnaire link remained active on Facebook for three months from February – April 2020, while professionals had four weeks from the initial email to complete the questionnaire with a reminder sent after two weeks.
In both questionnaires, the following four questions were asked:
- what does dementia mean to you?
- would you consider going for a memory assessment if you were worried about your memory?
- what according to you would be the benefits if dementia was diagnosed early?
- what do you think would be the potential negative outcomes for a person after being diagnosed with dementia?
In analysing the responses, we extracted basic themes, quantifying the occurrence of these themes and of words relevant to dementia awareness. Responses from the public and non-mental health professionals were analysed separately.
Overall, we had 67 responses from the public and 77 from non-mental health professionals working in the Trust (see table 1). In both groups, there were significantly more responses from females than males.
| Table 1: Number of Responses
There was a marked similarity between the two sets of responses (see table 2). In summary, the theme emerging from the responses was the repetition of “takes away”, ie, dementia takes away memory which progresses towards impaired quality of life. Here are four typical responses drawn from both target groups:
Something that takes things away from people, mainly memory and other thinking skills which in turn has an effect on somebody ability to carry out activities that someone without dementia would be able to carry out as normal.
A devastating disease which takes away your loved ones day by day. I have lost my mum to early onset Alzheimer’s and my youngest sister is receiving end of life care. Mum started showing signs at 59 and my sister was diagnosed at 43.
Dementia is a progressive disease that takes away so much from the person suffering from it as well as from his/her family. It is certainly not pleasant but quality of life may be improved if diagnosed early and proper education given to the family or carers.
A terrible illness that slowly takes away people’s ability to be who they are and then even the basic functions of life.
When people were asked whether they would consider going for a memory assessment if they were worried about their memory, the majority from both groups said that they would (see table 3).
Table 3: Memory assessment.
|General public||Non-MH professionals|
|Medication to slow the progression.
Accessing support ahead of time.
Advance care planning.
Get help for myself before it gets worse.
Learning to adjust.
Educating the family before things become too tough.
Identify treatable cause.
|Medication to slow the progression.
Advance care planning.
Family/friends/carer could learn more about the condition in order to help.
Identify treatable cause.
Appropriate help arranged.
Seek support and advice.
Both groups were also similar in their responses on the benefits of an early diagnosis (see table 4). There was general awareness of the use of medication which can slow the progression of dementia. Moreover, they acknowledged the importance of advance care planning. Common themes were medication, advance care planning and participation in research:
Medication can be more effective if early diagnosis is given. Also, accessing support ahead of time as well as putting plans in place for ongoing care and needs sooner rather than later.
Time to take advantage of any medication which can help alleviate symptoms. Time to prepare practically for what is likely to come.
To see if there was any medication that would help, to make any lifestyle changes that would help. To fulfil any ambitions while still able.
Possible medication to help slow it down, help and advice to make the best of your life afterwards and to stay independent for as long as possible.
Proper diagnosis and support. Medication to slow its development. Time to plan for the future. Information and coping strategies for self-family and carers.
There are drugs that may slow the disease down quite substantially. But the sooner treatment begins the more effective it will be.
Advance care planning
Time to prepare and make appropriate arrangements such as setting up power of attorney, deciding on accommodation, discussing with friends and family what preferences are. Joining in appropriate activities such as Singing for the Brain.
Advanced care planning, explanation of cause of problems, identifying treatment options, planning my future as I would wish it to be, identifying support of my choice for when I needed it, coordinated care in conjunction with other health needs.
I could make plans for the future and for my future care before I was unable to make those decisions myself. I would have time to tell my family and friends how much I care about them and to forgive anything I might say as the disease progresses. I would make the most of every single moment of lucidity if at all possible.
Participate in research
The opportunity to plan for the future whilst still able to, and perhaps take part in clinical trials that could benefit myself and other people.
Being able to prepare for future challenges whilst still in a position to make decisions. Giving researchers the chance to study if early disease treatments work.
Being able to make decisions about my future, spend precious time with my loved ones and helping with research.
|General public||Non-MH professionals|
Increasing physical and emotional burden on the family.
Labelled and written off by the society.
Eventually having to leave home.
Loss of independence.
Depression and anxiety.
Anxiety and depression
Burden on family.
Loss of independence.
“Will be put in a care home”
Some very disturbing themes emerged from responses to the question on potential negative outcomes (see table 5). Answers were very similar in both groups and the most alarming themes concerned stigma, depression, going into care and even suicide.
Stigma. Fear of the future. Over protection and premature loss of personal freedom due to fear of what might happen. Any mistake or bad judgement assumed to be an increase in severity of the disease. People staying away.
Being labelled and written off by society. Maybe being refused medical treatment. Feeling like they wouldn’t be able to do everything and possible depression.
Anxiety and lots of stigma from society. Potential issues with medical professionals blaming unconnected symptoms on the disease because it was an easy option.
I think they would be “labelled” Probably difficulties continuing working as people’s attitudes different towards them.
Depression, although I believe this often comes hand in hand with dementia anyway, denial, suicide.
Depression, Disturbed daily routine life, failure to recognise own kin, uninhabited inappropriate behaviour, suicide etc.
Pity. No cure. How to cope. Will the family look after me or will I be placed in a care home without any say.
Eventually having to leave their home as it has become a death trap to them. Very sad when they have to go into residential care and leave their familiar surroundings.
Could be a premature lack of independent living. Loss of job, social activities, the ability to drive, family taking on power of attorney, isolation.
The knowledge of what lies ahead, especially losing my driving licence and ultimately my independence.
Depression as the future for a person with dementia is bleak. Lack of information and support for the dementia sufferer and their family/carer. Patients are given a diagnosis and have to get on with it.
Always dreading what will happen. Depression. Worrying for the family. Being a burden on the family, no cure!
Depression. Fear for the future. Having to come to terms with a terminal disease with no cure.
Depression, fear, feeling they were going to be a burden to their family.
The general perception among the public and non-mental health clinicians is that dementia is still stigmatised with the risk that anyone who has it will be labelled and written off by society. Moreover, it also raises fear among people irrespective of their background and clinical knowledge that, once someone is diagnosed with dementia, they will be placed in a care home.
Since our sample size was relatively small with few men responding to the questionnaire, our next step is to consider conducting focus groups of men and women separately with a view to a finer-grained analysis of men’s and women’s opinions.
A diagnosis of dementia can be an overwhelming experience. When a person is referred by the GP to a memory assessment service, a comprehensive memory assessment is conducted which includes history, collateral history, relevant investigations such as CT scan or MRI, delivering the diagnosis and post-diagnostic support. Post-diagnostic support includes medication to slow down the progression of dementia, group therapy, and psychological and community support (Abhayaratne et al 2020).
This study demonstrates that despite the enormous level of health education and dementia awareness-raising in the community, people still think that it is inadequately understood or misunderstood. It also showed the differences in levels of interest between genders as more females participated in this study compared to males.
Moreover, the most startling finding was that people, whether the public generally or health professionals, still perceive dementia to be stigmatised and that a diagnosis could lead to being “labelled”, experiencing suicidal thoughts and eventually being placed in a care home.
Our findings correlate with those from Alzheimer’s Disease International (2019), which highlighted continued “unfair treatment” that can be “experienced in many ways – at home, in the community, even in healthcare settings – and include things like being denied choice, being ignored, unfair treatment in dating and intimate relationships, lack of privacy, joking about dementia, and of particular interest, inappropriate treatment by healthcare practitioners” (ADI 2019).
Respondents in our study also discussed stigma even though the majority thought initiation of medication, advance care planning, educating the family about the disease in order to help, and ability to seek support and advice ahead of time were all positive outcomes of early detection. This clearly illustrates that, even with a basic understanding of dementia, underlying fears remain.
The ADI report (2019) concluded that “stigma and knowledge issues around dementia are evidently still major barriers, not only to people seeking out more information, advice, support and a diagnosis but also in the basic understanding of Alzheimer’s disease and related dementias as medical conditions that require treatment, support, even rehabilitation.” It illustrates how health promotion and education on dementia need to be re-evaluated.
In the same report, ADI also talks about the negative impact stigma has “on research and research participation” making it “essential to take action, to improve awareness, to help dispel lingering myths around dementia and ultimately aim to reduce or even eradicate stigma.”
We presented our results to a focus group of professionals working in the Lancashire memory assessment service, where there was a consensus that some people were still reluctant to know their diagnosis because of the fear of being stigmatised and labelled. This apprehension begins from the moment a referral is sent to the memory assessment service by the GP.
In Lancashire, health education sessions start once the diagnosis is established, but there is no health education session before the assessment and that is when apprehension is at its peak. We would recommend introducing dementia education sessions at the memory assessment service before the assessment as part of an attempt to reduce stigmatisation. These sessions should be interactive to maximise impact.
Our study findings indicate that dementia awareness among health professionals with non-mental health backgrounds is about equal to that of the wider public. It raises questions about whether there is a need for more dementia education aimed at this group.
A study by Surr et al (2020) described the barriers and facilitators to implementing dementia education and training in health and social care services. It stated that interactive, face-to-face dementia training provides strong facilitators to behaviour change. But when training was self-directed, such as e-learning or workbooks, and not tailored to learners’ roles, it resulted in limited knowledge and was a barrier to learning.
This study has highlighted that there is scope for improvement in raising dementia awareness and that more should be done in terms of dementia education, not only among the public generally but among healthcare workers particularly. A pragmatic approach is required, where relevant information is provided at an appropriate time.
Abhayaratne C, Blanchard E, Greally S, Rogers S (2020) Standards for Memory Services – Seventh Edition. London: Memory Services National Accreditation Programme (MSNAP)
Alzheimer’s Disease International (2019) World Alzheimer Report 2019: Attitudes to Dementia. London: ADI.
Stokes L, Combes H, Stokes G (2015) The dementia diagnosis: a literature review of information, understanding, and attributions. Psychogeriatrics 15(3) 218-25.
Surr CA, Parveen S, Smith SJ, Drury M et al (2020) The barriers and facilitators to implementing dementia education and training in health and social care services: a mixed-methods study. BMC Health Services Research 20(1) 512.
Wolff JL, Roter DL, Barron J, Boyd CM et al (2014) A tool to strengthen the older patient–companion partnership in primary care: Results from a pilot study. Journal of the American Geriatrics Society 62(2), 312-9.
Dr Qutub Jamali is specialty doctor, old age psychiatry, and Dr Deborah Foster, Dr Imogen Davies iand Dr Doaa Sadek are psychiatry trainees, all in the Quality Improvement Team at Lancashire & South Cumbria NHS Foundation Trust (LSCFT). Carol-Ann Bristow is quality improvement lead and Jo Blofeld is quality improvement facilitator, both also at LSCFT.