Questionnaire on National Care Pathways for People with Dementia Living at Home 2014 YEARBOOK For queries please contact Ana Diaz: by phone 0035229797014, or by e-mail at Ana.diaz@alzheimer-europe.org Please return this questionnaire to: Ana.diaz@alzheimereurope.org, before 27th May 2014 0
INTRODUCTION This questionnaire is intended to serve as a tool to collect information about national care pathways for people with dementia. Care pathways chronologically pinpoint the key steps to be taken throughout a person s care journey. In the case of dementia, the term care pathway makes reference to how national systems seek to provide seamless care and treatment from the moment of detection and diagnosis of dementia to end-of-life. Also, the term refers to the experiences of people with dementia and their families with such care systems. In short, it describes the journey of a person from the time he/she experiences a memory concern (or other dementia-related symptom) to the time the person is assessed and given a diagnosis, and later, to the treatment and care that is available to the person to help them live well with dementia. Alzheimer Europe is asking all its Members to complete this questionnaire about national care pathways for people with dementia. By the end of the year, we will produce a summary report where the key features of the care pathways for people with dementia in Europe and their main similarities and differences will be shown. This summary report will substitute the Yearbook format that was used in previous years. National information, reflecting the care pathway of each country, will also be available on our website. We would like you to complete this questionnaire and send it back to us before 27 th May 2014. The questionnaire has been designed to be filled out electronically. For each section, we will be asking you about how the care pathway, or a particular stage of it, is addressed at a policy level ( the theory ), and also, about the most common practices in your country ( what is happening ). For example, in some countries there may be a guideline suggesting that a person with memory concerns should be assessed by a specialist doctor within x weeks, but, this may, in practice, take y weeks due to different circumstances. Where important differences between theory (national policies) and the practices exist, we would like you to outline such differences at the end of the section. We also understand that some countries may lack such policy documents or guidelines. In these countries, only information regarding the practices should be completed. For example, in some countries, there may be no guidelines or recommendations about the length of time between a person developing memory concerns and being assessed by a doctor, but we are still interested in hearing about how long it takes on average for people to be assessed. It may seem a lengthy questionnaire, but we need to ask several questions to gain a sufficient understanding of the care pathway for people with dementia in your country. Also note that for many questions, you will only need to read the suggested statements and highlight the option that best describes the situation in your country. We hope this will make the questionnaire easier to complete. There are a number of questions where you are asked to provide additional information and in these cases, you can type your response below the question using as much space as you need. If you have any questions or experience any difficulty in completing this document, please do not hesitate to contact me. I can be contacted by telephone 0035229797014, or by e-mail at Ana.diaz@alzheimereurope.org. COMPLETED QUESTIONNAIRES SHOULD BE RETURNED TO Ana.diaz@alzheimer-europe.org BEFORE 27 TH MAY 2014 1
SECTION 1 - GENERAL INFORMATION In this first section of the questionnaire we would like you to identify any national policy document/s referring to or describing the national care pathway for people with dementia in your country. Then, in the following sections of the questionnaire, we will ask you about the relevant stages within the care pathway, such as the pathways to diagnosis and to post-diagnostic support and care (psycho-social care). In this questionnaire we are only considering the information relevant to people with dementia living in the community and during the mild and moderate stages of the disease. This questionnaire does not address information about residential care or end-of-life care. Also, we would like to focus on the person living with dementia and we will not be asking you for any information about caregivers. Q1- Is the care pathway for people with dementia addressed in any national policy (e.g. Government regulation, guideline, recommendation, a national dementia strategy, expert consensus statement etc.) in your country? Please put a cross in the YES or NO column as appropriate in the table below. If you reply YES, provide the details requested in the following columns. You can add as many rows as necessary to the table if there is more than one national policy where the care pathway is addressed in your country. NO YE S NAME OF NATIONAL POLICY DATE ISSUED BY MAIN STAGES OF THE CARE PATHWAY AS DESCRIBED IN THE NATIONAL POLICY X Living well with February Department Good-quality early diagnosis and dementia: A national Dementia Strategy (England) 2009 to March 2014 of Health intervention for all. Good-quality information for people with dementia and carers. Enabling easy direct access to care, support and advice following diagnosis. Peer support and learning networks. Improved community personal support services. Improved quality of care for people with dementia in general hospitals. Improved intermediate care for people with dementia. Considering the potential for housing support, housing-related services and telecare to support people with dementia and their carers. Living well with dementia in care homes. Improved end of life care for people with dementia. X Prime Minister s challenge on dementia: March 2012 to Department of Health Increased diagnosis rates through regular checks for the over 65s. 2
Delivering major May 2015 Financial rewards for hospitals offering improvements in quality dementia care. dementia care and A Dementia Care and Support Compact research by 2015 signed by leading care home and home care (England) providers. Promoting local information on dementia services. Better support for carers. Creation of dementia-friendly communities. X National Dementia February Welsh Improved service provision through better Vision for Wales: 2011 Government joint working across health, social care, the Dementia Supportive third sector and other agencies; Communities Improved diagnosis and timely interventions; Improved access to better information for people with dementia and carers, including greater awareness for the need for advocacy; Improved training for those delivering care, including research. X Improving dementia November Department The importance of early diagnosis services in Northern 2011 of Health, Access to special services for assessment Ireland: A regional Social Services and diagnosis strategy and Public Information and support at the time of a Health diagnosis Initial care and support A multi-disciplinary approach to meeting need Preserving skills and functioning Medication and other interventions Respite care Environmental design Assistive technology Supported housing Crisis support Inpatient care End of life care Supporting people in residential and nursing homes 3
SECTION 2 NATIONAL PATHWAYS TO DIAGNOSIS Diagnosis is a critical stage of the journey of people with dementia and their families. Diagnosis is often referred to as the gateway to care as it may provide access to treatment and support and offers an opportunity to plan for the future. This section of the questionnaire (section 2) aims to learn about the pathways to a diagnosis of dementia in your country. The section addresses three main stages relevant to diagnosis. The first refers to the time prior to diagnosis and focuses on the policies and interventions that could help people to recognise dementia symptoms and to seek help. The second refers to diagnosis and to the professionals that play a key role during this time. The third refers to the disclosure of diagnosis and to the medical follow-up of the disease. The section starts out with information about National Policies or guidelines for the diagnosis of dementia in your country. The remainder of the section looks at the Practices in relation to diagnosis in your country. 2.1 NATIONAL POLICIES Q2- Is the diagnosis of dementia addressed in any national policy (e.g. Government regulation, guideline, recommendation, national dementia strategy, expert consensus statement, etc.) in your country? Please put a cross in the YES or NO column as appropriate in the table below. If you reply NO, please go to Q4. If you reply, YES, please provide the details requested in the following columns. You can add as many rows as necessary to the table if there is more than one national policy where the diagnosis of dementia is addressed in your country. NO YES NAME OF NATIONAL POLICY DATE ISSUED BY X Prime Minister s challenge on dementia: March 2012 Department of Health Delivering major improvements in dementia to May 2015 care and research by 2015 (England) X National Dementia Vision for Wales: February Welsh Government Dementia Supportive Communities 2011 X Improving dementia services in Northern November Department of Health, Ireland: A regional strategy 2011 Social Services and Public Health Q3- Please look at all the topics related to diagnosis listed below (A to F), and highlight in bold the one/s that are addressed in the national policy document/s that you have identified in Q2: Prime Minister s challenge on dementia A. Measures / interventions for the timely detection of dementia B. Criteria for referral to specialist assessment C. Diagnosis work-up D. Expected times for a person to be assessed/diagnosed E. Disclosure of diagnosis F. Medical follow-up of dementia G. Others, please specify: National Dementia Vision for Wales: Dementia Supportive Communities A Measures / interventions for the timely detection of dementia B Criteria for referral to specialist assessment C Diagnosis work-up 4
D Expected times for a person to be assessed/diagnosed E Disclosure of diagnosis F Medical follow-up of dementia G Others, please specify: Improving dementia services in Northern Ireland: A regional strategy A Measures / interventions for the timely detection of dementia B Criteria for referral to specialist assessment C Diagnosis work-up D Expected times for a person to be assessed/diagnosed E Disclosure of diagnosis F Medical follow-up of dementia G Others, please specify: 2.2 PRACTICES IDENTIFYING AND DETECTING DEMENTIA Q4- This section refers to the time a person first experiences symptoms of dementia (i.e. prior to being assessed and diagnosed). We want to gather information about any existing interventions to promote a timely diagnosis of dementia in your country, in particular the interventions that may help to better identify and detect dementia. Please read each of the following questions and reply for each considering the situation in your country: England A. Are people routinely offered memory screenings in your country (within the healthcare system)? If this is the case, please explain from what age people can benefit and how often. B. Has any campaign, to increase public awareness about dementia, recently been organised in your country? The Dementia Friends campaign was launched in 2013 with the aim of raising awareness of and overcoming the stigma associated with dementia. There will be 1 million Dementia Friends by 2015. People can become a Dementia Friend by attending an information session or by watching an online video. A television advertising campaign to promote Dementia Friends, funded by Public Health England, was launched on May 7 2014. This is part of a wider dementia-friendly communities programme which aims to raise awareness of dementia in many different parts of society (e.g. businesses, shops, faith groups, leisure centres, GP surgeries, hairdressers) to enable people with dementia and their carers to live well with dementia. Alzheimer s Society s Worried about your memory? campaign, which has run since 2008, aims to increase public understanding of the early signs of dementia, and encourage people with memory concerns to visit their GP. The campaign materials include leaflets, booklets and posters, and materials are distributed to 9,000 GP surgeries. The Dementia Community Roadshow (initially funded by a charity of the year partnership with the Tesco supermarket chain) takes information about dementia out to communities and offers the public the opportunity to seek free, tailored and confidential advice in an informal environment. The Roadshow has been running for three years. Every year, there is Dementia Awareness Week which encourages people to seek advice if they are worried about their memory. C. Are General Practitioners/ Family Doctors (hereafter referred to as GPs) or other health professionals incentivised in any way to identify people at risk of dementia? 5
The Quality and Outcomes Framework is a voluntary incentive for GPs. There are 3 indicators for dementia. The first dementia indicator (DEM1) incentivises GPs to keep a register of patients with dementia who use their practice. There is also a Dementia Enhanced Service which encourages GPs to identify patients at risk of dementia (for example people with heart disease, diabetes, obesity or learning disabilities), offer an assessment to detect signs of dementia and offer a referral for a diagnosis where dementia is suspected. Enhanced services are primary medical services which are non-essential or additional services. In 2012/13 the Department of Health put in place a specific national dementia Commissioning for Quality and Innovation (CQUIN) relating to hospital care. The dementia CQUIN has been expanded and seeks to incentivise the identification of patients with dementia and other causes of cognitive impairment. It also aims to prompt appropriate referral and follow up after they leave hospital and to ensure that hospitals deliver high quality care to people with dementia and support their carers. Since 2012/13, performance for the dementia CQUIN has measured against one indicator which sought to Find people with dementia, Assess and Investigate their symptoms and Refer for support (FAIR). The second CQUIN indicator for dementia incentivises hospitals to provide sufficient clinical leadership of dementia and appropriate training of staff. Providers must confirm a named lead clinician. D. Please briefly describe here any other existing intervention that could be relevant for the timely diagnosis of dementia in your country: Wales A. Are people routinely offered memory screenings in your country (within the healthcare system)? If this is the case, please explain from what age people can benefit and how often. B. Has any campaign, to increase public awareness about dementia, recently been organised in your country? Dementia Friends was launched in February 2014. We only have face-to-face information sessions. You can check with Chella Borde how many people have become Dementia Friends/what our target number is. C. Are General Practitioners/ Family Doctors (hereafter referred to as GPs) or other health professionals incentivised in any way to identify people at risk of dementia? QOF applies in Wales, audited by LHBs. Do use DEM1 though I think it has less points attached to it than in England. D. Please briefly describe here any other existing intervention that could be relevant for the timely diagnosis of dementia in your country: Northern Ireland A. Are people routinely offered memory screenings in your country (within the healthcare system)? If this is the case, please explain from what age people can benefit and how often. B. Has any campaign, to increase public awareness about dementia, recently been organised in your country? C. Are General Practitioners/ Family Doctors (hereafter referred to as GPs) or other health professionals incentivised in any way to identify people at risk of dementia? D. Please briefly describe here any other existing intervention that could be relevant for the timely diagnosis of dementia in your country: GETTING A DIAGNOSIS We are now moving to the time when the individual seeks help due to memory problems or other dementia-related symptoms. We want to gain a better understanding of what a person who is experiencing these symptoms (and/or his/her family) needs to do in order to be assessed and diagnosed. We are aware that in Europe there are different pathways that people may need to follow in order to be assessed and diagnosed. Most often, the professionals 6
involved in these processes are the GP and one of the following specialists: Neurologist, Old Age Psychiatrist and Geriatrician. We would like to know more about the specific situation in your country. Q5- Please read the followings statements (A,B,C) carefully and highlight the one that best reflects the situation in your country within the public (as opposed to private) healthcare system. If none of them reflects what is happening in your country please go to answer D and describe it in your own words: England A. GPs can generally assess and diagnose dementia, and only particular cases, often those considered as complex, are referred to a specialist assessment service/doctor. o Please provide some examples of the type of cases that are referred to specialist assessment in your country: B. The GP cannot (in any case) make a diagnosis of dementia but the GP has a relevant role as the person with memory problems has to be referred to a specialist assessment service/doctor by the GP. C. The person with suspected dementia/ family can decide whether to see a GP and to be referred by the GP to a specialist service or to go directly to a specialist assessment service/ doctor of his/her choice without seeing the GP D. None of the above - describe it in your own words: The person with suspected dementia/ family can decide whether to see a GP and to be referred by the GP to a specialist service. Other healthcare professionals can refer the person to a specialist service if they suspect a person has dementia. Wales A. GPs can generally assess and diagnose dementia, and only particular cases, often those considered as complex, are referred to a specialist assessment service/doctor. o Please provide some examples of the type of cases that are referred to specialist assessment in your country: B. The GP cannot (in any case) make a diagnosis of dementia but the GP has a relevant role as the person with memory problems has to be referred to a specialist assessment service/doctor by the GP. C. The person with suspected dementia/ family can decide whether to see a GP and to be referred by the GP to a specialist service or to go directly to a specialist assessment service/ doctor of his/her choice without seeing the GP D. None of the above - describe it in your own words: Northern Ireland A. GPs can generally assess and diagnose dementia, and only particular cases, often those considered as complex, are referred to a specialist assessment service/doctor. o Please provide some examples of the type of cases that are referred to specialist assessment in your country: B. The GP cannot (in any case) make a diagnosis of dementia but the GP has a relevant role as the person with memory problems has to be referred to a specialist assessment service/doctor by the GP. C. The person with suspected dementia/ family can decide whether to see a GP and to be referred by the GP to a specialist service or to go directly to a specialist assessment service/ doctor of his/her choice without seeing the GP D. None of the above - describe it in your own words: 7
Q6- Which of the following doctors are involved in the assessment and diagnosis of dementia in your country? Please put a cross in the yes or no column as appropriate. For each doctor where you select yes, please outline in the next column the main criteria for the diagnosis to be made by such doctor (e.g. is this decision based on type or severity of dementia, availability, age of the person, comorbidities, person or family s own preferences, etc.?) Criteria for the assessment and diagnosis to be made by this No Yes doctor. If there are no clear criteria please provide some examples of cases that are typically assessed by this doctor. GP X For most patients GP does an initial cognitive assessment (I.e. GPCOG or MMSE) and rules out other treatable conditions, then refers them on for specialist assessment if dementia is suspected. According to NICE guidance, GPs are first contact (as they are for everything) and should refer to a old-age psychiatrist led diagnostic service (memory clinic). This might be a multidisciplinary team, depending on the area. Neurologist X Carries out brain scanning, sometimes has a role in diagnosing if part of MDT. Old age psychiatrist X Can be the main individual involved in diagnosis, depending on system in local area (could also be geriatrician) Geriatrician X Can be the main individual involved in diagnosis, depending on system in local area (could also be old age psychiatrist) Multi-disciplinary team (please provide details of type of professionals): Others X Neurologist, Old age psychiatrist, geriatrician, nurse, clinical psychologist, radiographer might all be involved in an MDT. Would probably only use an MDT to discuss complex cases. Q7- We would also like to know about the pathways to diagnosis of some groups which may have specific, or more complex needs, such as people with learning disabilities, young people or people from minority ethnic groups. Are there any specific assessment services available to these groups? Do people in these groups experience any barrier to diagnosis? Learning disabilities SPECIFIC ASSSESSMENT SERVICES None BARRIERS TO DIAGNOSIS Young people None Rarity of dementia among younger people Attitudes from health professionals Lack of suitable services Minority ethnic groups None Limited knowledge and understanding of dementia in BAME communities Social isolation No language for dementia in south Asian languages Lack of awareness of services available Lack of culturally sensitive services Q8- Does the specialist assessment service/doctor provide feedback about relevant information relating to diagnosis and /or treatment to the GP? Please highlight the option that best reflects the situation in your country: A. Never B. It depends on the specialist s own preferences or workload C. This is a common practice in my country for complex cases D. This is a common practice in my country for all cases E. Other situation, please describe it in your own words 8
DISCLOSING DIAGNOSIS AND FOLLOW-UP We are now moving to the time after the assessment has been done and will be asking you about how diagnosis is disclosed and also about the follow-up arrangements. The former includes information about whom the diagnosis is disclosed to and the type of information provided at this point in time. The latter, refers to the health professionals that are involved in the medical follow-up of the person with dementia and the frequency of visits. Q9- To whom the diagnosis of dementia is disclosed in your country? Please read the following options and highlight in bold the one that best describes the situation in your country. If none reflects what is happening in your country please go to E and describe it using your own words A. Family members (not the person with dementia) B. Family members and in certain cases, the person with dementia if the family requests /agrees to it C. The person with dementia is routinely asked about his/her desire to know his/her diagnosis and his/her desire is respected. D. It depends on the particular doctor making the diagnosis E. Other situations, please describe in your own words Q10- Who (typically) discloses the diagnosis to the person with dementia/ family in your country? The specialist who made the diagnosis. Q11- What type of information is the person with dementia and/or family provided with at the time of diagnosis? Please highlight as many options as necessary: IF DIAGNOSIS IS MADE BY GP - Information about the dementia / prognosis - Pharmacological treatment possibilities - Non-pharmacological treatment possibilities - Availability of services - Information about legal, financial issues, driving - Alzheimer s association contact details - Others, please describe it in your own words IF DIAGNOSIS IS MADE BY SPECIALIST - Information about the dementia / prognosis - Pharmacological treatment possibilities - Non-pharmacological treatment possibilities - Availability of services - Information about legal, financial issues, driving - Alzheimer s association contact details - Others, please describe it in your own words: Information on dementia, services and treatments is variable across the country. It is dependent on the specialist, the quality and types of services commissioned. Q12- Please read the following options (A, B, C) and highlight in bold the one that best describes the kind of medical follow-up people with dementia receive in your country: A. Once diagnosis (and if appropriate, pharmacological treatment) has been established, the person with dementia is discharged from the specialist assessment service/ doctor and the disease is, in all cases, monitored by a GP or by another doctor in the community. B. Once diagnosis (and if appropriate, pharmacological treatment) has been established, some people with dementia are discharged and monitored by their GP, but others, are monitored by the specialist assessment service/ doctor. o Please describe the type of cases that are monitored by the specialist service/doctor and the type of cases monitored by GP: C. In all cases, the disease is monitored by the specialist assessment service/ doctor. D. None of the above describes the situation in my country - please describe it in your own words: The situation is variable across the country. There is currently no minimum standard for support following a diagnosis. 9
Q13- After the diagnosis, how often does the person with dementia have a follow-up visit with the o o GP: A once yearly review is compulsory within the current Quality and Outcomes Framework. People with dementia may visit more frequently with regard to other co-morbid conditions. Specialist assessment service / doctor: Yearly to review medication (if Alzheimer s Disease). If there is no change in the severity of a person s condition the specialist may discharge the patient from the service entirely into the care of the GP. Q14- Does this frequency change depending on the type of dementia, age, severity of dementia or other circumstances? There is no requirement for follow up at a memory service if the dementia sub-type is not Alzheimer s Disease. The follow up meeting is a medication review, and few medications are used for dementias other than Alzheimer s Disease. Q15- Please briefly outline the main barriers and challenges that people with dementia and families face in relation to diagnosis in your country A lack of awareness and understanding / the stigma of dementia. GP attitudes to diagnosing dementia (mainly if there is no support available, some GPs believe there is no point in diagnosing). Variable provision of diagnostic services. Variable waiting times for diagnostic services. Q16- If in your country, there are important differences in relation to diagnosis, between what is described in the policy documents ( theory ) and practices, please outline such differences here England The Prime Minister s challenge on dementia includes an ambition to increase diagnosis rates to 66% by 2015. This is reflected in the mandate to NHS England which states that two-thirds of people with dementia should receive a diagnosis, with the right post-diagnostic support. Diagnosis rates vary widely across England, with an average of 46%. Wales Northern Ireland Q17- If there is anything in relation to the pathways to a diagnosis of dementia in your country that has not been covered in any of the previous sections and that you feel is worth mentioning, please explain it here SECTION 3. POSTDIAGNOSTIC TREATMENT AND SUPPORT We are now moving to the post-diagnostic stage. Section 3 deals with the treatments and care that are available to people with dementia in your country and that may help people to enjoy a better life whilst living with dementia. It includes both pharmacological and psycho-social treatments and care. This section does not include institutional care or end-of-life care. Interventions and services in this section refer to the person with dementia. 10
3.1 NATIONAL POLICIES Q18- Is the treatment of dementia addressed in any national policy (e.g. Government regulation, guideline, recommendation, national dementia strategy, expert consensus statement, etc.) in your country? Please put a cross in the YES or NO column as appropriate. If you reply NO to both, please go to section 3.2. If you reply YES, please provide the details requested in the following columns. You can add as many rows as necessary to the table if there is more than one national policy where the treatment of dementia is addressed in your country. Pharmacological treatment of dementia (cholinesterase inhibitors and/or memantine) NO YES NAME OF NATIONAL POLICY X Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease Psycho-social support and care X Dementia: Supporting people with dementia and their carers in health and social care X X Quality Standard 1 on Dementia Quality Standard 30 on supporting people to live well with dementia DATE March 2011 November 2006 June 2010 April 2013 ISSUED BY NICE NICE NICE NICE 3.2 PRACTICES PHARMACOLOGICAL TREATMENT OF DEMENTIA We want to start by addressing the pharmaceutical treatment of dementia in your country (cholinesterase inhibitors and memantine). You can see in red the information that you provided for the 2012 Yearbook, please read it and correct if necessary: There are currently four drugs for Alzheimer's disease licensed in the UK (Donepezil, Rivastigmine, Galantamine and Memantine). One of these drugs, rivastigmine is also licensed for the treatment of Parkinson's disease dementia. There are no licensed drug treatments for other forms of dementia. In the first instance, these drugs can only be prescribed by a consultant. A consultant will carry out a series of tests to assess whether the person is suitable for treatment and will write the first prescription, if appropriate. Subsequent prescriptions may be written by the GP or the consultant. Anticholinesterase treatments are available to people in the mild to moderate stages of Alzheimer's disease and that Ebixa (Memantine) should be available for people in the severe stages and for people who are unable to tolerate anticholinisterase treatments. Q19- Can you also describe who reviews this medication and how often it is reviewed? Medication is reviewed by specialists in Memory Services, typically Old Age Psychiatrists or Geriatricians. It is reviewed on an annual basis. In some areas there are shared care protocols between primary and secondary care, which enable GPs to carry out medication reviews. 11
Q20- When is this medication discontinued and by whom? Medication is discontinued at the discretion of specialist assessors (usually Old Age Psychiatrists or Geriatricians). This would like be due to medication having limited effects, or the side effects of the medication outweighing the benefits brought. PSYCHO-SOCIAL CARE: NON-PHARMACOLOGICAL INTERVENTIONS AND SOCIAL RESOURCES. In this last section of the questionnaire we want to better understand how people with dementia and their families get to know about and access the available psycho-social care and services in your country. The section starts off by asking you how people with dementia/families access the relevant information about services or interventions. Following this, it looks at how the psycho-social needs of people with dementia are assessed and what people with dementia/carers have to do in order to access or receive care and support. Finally, the section refers to how people with dementia/families navigate the system and to the challenges or barriers they may face. ACCESSING INFORMATION Q21- Please select in the table below the professionals (or persons) who play a key role in providing information and advice about available psycho-social services, resources and entitlements to people who are newly diagnosed with dementia in your country? Whilst the majority of the professionals listed in the table may provide some information, please select only the one/s who are most significantly involved in providing this information. For each case where you select Yes, please complete all the columns. YES Is the first contact with this professional made around the time of diagnosis or later in the disease? GP X Usually around the time of diagnosis What type of information does this professional / person provide? Variable. Some will provide information on local support groups / social services, other may not provide any information. Where is this professional based? (e.g. public or private sector, Alzheimer Association, etc.) Public sector Specialist doctor X Time of diagnosis Variable. Some will Public sector provide information on local support groups / social services, other may not provide any information. Social Worker (not dementia X Time of diagnosis / Variable. Some will Public sector specific) Later in the disease provide information on local support groups / social services, other may not provide any information Community or district nurse (not X Time of diagnosis / Variable. Some will Public sector dementia specific) Later in the disease provide information on local support groups / social services, other may not provide any information Dementia specific professional - X Time of diagnosis Navigate and signpost a Public sector / voluntary 12
e.g. dementia adviser, dementia coordinator, dementia support manager, case manager, admiral or memory nurse, etc. Please indicate the name/s of the professional/s performing this role in your country: Dementia Adviser, Dementia Support Worker, Dementia Navigator, Admiral Nurse Peer support networks X Time of diagnosis / Later in the disease Trained volunteers X Time of diagnosis / Later in the disease Others, please specify: Voluntary organisations X Time of diagnosis / Later in the disease ASSESSING NEEDS AND ACCESSING TREATMENT OR SERVICES person with dementia and their carer around health and social care services. Support and information from people with previous experience Befriending services Helpline, online support, such as Talking Point, carers support sector Voluntary sector Voluntary sector Voluntary sector Q22- How are the psycho-social needs of the person with dementia evaluated at the time of diagnosis? Please indicate where, how and who evaluates the psycho-social needs of the person with dementia. Access to psycho-social support is not consistent across the UK. There is limited statutory responsibility to deliver psycho-social care, and it is unclear where the responsibility sits across health and social care. Some memory clinics provide psycho-social support to people with dementia. In order to gain full accreditation by the Memory Services National Accreditation Programme (MSNAP), services must offer psycho-social support. The new Care and Support Act (2014) in England requires local authorities to provide information and support to people who have substantial needs. o If this applies only to certain cases, please explain the criteria or provide examples of the type of cases where these needs are evaluated at the time of diagnosis. The eligibility criteria within the Care and Support Act (2014) are: Critical when: and/or life is, or will be, threatened; and/or significant health problems have developed or will develop; and/or there is, or will be, little or no choice and control over vital aspects of the immediate environment; serious abuse or neglect has occurred or will occur; and/or there is, or will be, an inability to carry out vital personal care or domestic routines; and/or vital involvement in work, education or learning cannot or will not be sustained; and/or vital social support systems and relationships cannot or will not be sustained; and/or vital family and other social roles and responsibilities cannot or will not be undertaken Substantial when: there is, or will be, only partial choice and control over the immediate environment; and/or abuse or neglect has occurred or will occur; and/or 13
there is, or will be, an inability to carry out the majority of personal care or domestic routines; and/or involvement in many aspects of work, education or learning cannot or will not be sustained; and/or the majority of social support systems and relationships cannot or will not be sustained; and/or the majority of family and other social roles and responsibilities cannot or will not be undertaken Moderate when: Low when: there is, or will be, an inability to carry out several personal care or domestic routines; and/or involvement in several aspects of work, education or learning cannot or will not be sustained; and/or several social support systems and relationships cannot or will not be sustained; and/or several family and other social roles and responsibilities cannot or will not be undertaken and/or there is, or will be, an inability to carry out one or two personal care or domestic routines; and/or involvement in one or two aspects of work, education or learning cannot or will not be sustained; one or two social support systems and relationships cannot or will not be sustained; and/or one or two family and other social roles and responsibilities cannot or will not be undertaken Those with moderate or low needs are not eligible for support from local authorities. Q23- Are people with dementia in your country offered a care plan? Sometimes. If not, please go to Q28. o o If this applies only to certain cases, please explain the criteria or provide examples of the type of cases where a care plan is offered. Variable across the country. When is the care plan made? Which professional/s are involved in developing the care plan (e.g. social worker, nurse, case manager, care coordinator, etc.)? A care plan should be made following an assessment of social care needs, or following discharge from hospital, or when a person goes into a care home. Any health and care professional who works with the person with dementia should be involved in care planning, as well as the individual themselves and their carer. 14
Q24- Do people with dementia in your country have access to the following interventions or programmes? Please explain 1) where it is organised (e.g. public or private sector, Alzheimer s Association, etc.) and 2) what does the person/family have to do to access this (e.g. where is the person informed about it, which professional/s does the person have to get in touch with to access it, are there any criteria to access it). No Yes Where is it organised? What does the person/family have to do to access this? Non-pharmaceutical interventions to maintain or improve the symptoms of dementia, e.g. reminiscence, reality orientation therapy, aromatherapy, massage, snoezelen, etc. X Public, private, voluntary organisation s (eg. Alzheimer s Society, Age UK) Have a confirmed diagnosis of dementia. Education about dementia, counselling or psychological support (e.g. coping with dementia) X Public, private, voluntary organisation s (eg. Alzheimer s Society, Age UK) Individuals can voluntarily contact relevant organisations for advice (such as Alzheimer s Society helpline). For counselling or psychological support, they will need a referral. Interventions/services that help the person to stay socially engaged or connected with the community, e.g. peer support, Alzheimer cafes, befriending services, etc. X Public, private, voluntary organisation s (eg. Alzheimer s Society, Age UK) Usually by referral from social services. Q25- Do people with dementia in your country have access to the following services to remain independent and/ or at home? For the services that are available for people with dementia, please complete all the columns. Who provides this service? Is this service dementia specific? Professionals that the person has to get in touch with to access this service Main criteria to access this (e.g. age, disability, diagnosis of dementia, etc.)? Domiciliary care (home help, e.g. cleaning, cooking, etc. or meals on wheels) Local authorities have an obligation to provide social care services, however, it is most common that the service is outsourced to a private or voluntary sector service provider. A person with dementia, their carer or a family member can contact the social services department of the local authority themselves and request an assessment. Referrals may also be made by any other health or social care professional. Once referred (either themselves or by a professional), a person will have an assessment of their social care needs. The assessment is needs-based and not dependent on a diagnosis of dementia or a person s age. If the assessment results in a person saying they need these services, they will be entitled to receive them. However, 15
social care is means-tested, so if they may have to fund their own care. Home care (personal hygiene, medication, continence care, etc.) Local authorities have an obligation to provide social care services, however, it is most common that the service is outsourced to a private or voluntary sector service provider. A person with dementia, their carer or a family member can contact the social services department of the local authority themselves and request an assessment. Referrals may also be made by any other health or social care professional. Once referred (either themselves or by a professional), a person will have an assessment of their social care needs. The assessment is needs-based and not dependent on a diagnosis of dementia or a person s age. If the assessment results in a person saying they need these services, they will be entitled to receive them. However, social care is means-tested, so if they may have to fund their own care. House adaptations Local authorities have an obligation to provide social care services, however, it is most common that the service is outsourced to a private or voluntary sector service provider A person with dementia, their carer or a family member can contact the social services department of the local authority themselves and request an assessment. Referrals may also be made by any other health or social care professional. Once referred (either themselves or by a professional), a person will have an assessment of their social care needs. The assessment is needs-based and not dependent on a diagnosis of dementia or a person s age. If the assessment results in a person saying they need these services, they will be entitled to receive them. However, social care is means-tested, so if they may have to fund their own care. A person could privately pay for this if they knew what adaptations they needed without an assessment. Assistive technology Local authorities have an obligation to provide social care services, however, it is most common that the service is outsourced to a private or voluntary sector service provider A person with dementia, their carer or a family member can contact the social services department of the local authority themselves and request an assessment. Referrals may also be made by any other health or social care Once referred (either themselves or by a professional), a person will have an assessment of their social care needs. The assessment is needs-based and not dependent on a diagnosis of dementia or a person s age. If the assessment results in a person saying they need these services, they will be entitled 16
professional. to receive them. However, social care is means-tested, so if they may have to fund their own care. A person could privately pay for this if they knew what adaptations they needed without an assessment. Day centres Local authorities have an obligation to provide social care services, however, it is most common that the service is outsourced to a private or voluntary sector service provider. A person with dementia, their carer or a family member can contact the social services department of the local authority themselves and request an assessment. Referrals may also be made by any other health or social care professional. Once referred (either themselves or by a professional), a person will have an assessment of their social care needs. The assessment is needs-based and not dependent on a diagnosis of dementia or a person s age. If the assessment results in a person saying they need these services, they will be entitled to receive them. However, social care is means-tested, so if they may have to fund their own care. Semi-independent living in the community, e.g. sheltered housing or similar schemes Local authorities may provide these schemes, but there is no obligation. A person with dementia or their family would have to contact the local authority and find out what options are available to them. There is no set criteria, as the choice to move into this accommodation would be down to the individual rather than the local authority. Others: Please specify Q26- Are there any specific services or interventions available to people with dementia with complex needs such as young people, people with learning disabilities or people from minority ethnic groups? Some voluntary organisations have specific services. For example, Alzheimer s Society runs several programmes to support people from BAME communities and a few services for younger people. This is dependent on the area and local funding. NAVIGATING THE SYSTEM. Q27- Are there any professionals/services in the community that provide ongoing information and support, i.e. that can anticipate, evaluate and signpost service options according to the changing needs of the person with dementia? If so, please provide the name of this professional/service and briefly outline his/her role. England Dementia Advisers provide people with dementia and their carers a named contact throughout their dementia journey. Referrals to the service may come from GPs, Community Mental Health Teams or other health and social care professionals, or self-referral. The main aims of the service are: 17
Provision of a quality information and signposting service which is tailored to individual need. This will be supported by the Society s constantly evolving national and local information base. Focus on the individual empowering them to access the information they need, promoting independence, self-help, well-being, choice and control. Collaboration with other health and care professionals and active development of these partnerships to maximise the outcome for the person with dementia. Accessibility seeking out those affected by dementia that we have traditionally found it hard to reach. The service operates from dementia adviser centres, which can be memory clinics, GP surgeries or Society services. Wales Northern Ireland o If this type of professional/service does not exist in your country, please explain what people with dementia/families are expected to do when their needs change? Q28- What are the procedures and the support available to people with dementia / families when: A critical event takes place: e.g. transition from one service to another, for example if a person receiving home care wants to attend day care (without a crisis). Support and information will vary across the country. A crisis/ emergency takes place: e.g. when existing living and support arrangements are breaking down and the person needs higher or different care. A health or care professional will make an emergency referral to the local social services and an emergency plan will be put in place. Again information and support will depend on the area. BARRIERS Q29- Overall, what are the main barriers or challenges that people with dementia and their families face in your country when trying to get information about the care system: 1. Health and care professionals are unaware of what is support is available. 2. A variability of information / services across the country. to gain access: 1. A lack of funding in social care meaning there are not always suitable services available. to navigate the care system: 1. People with dementia need to access services from across health and social care. 2. The systems are complex and health and social care services are fragmented. 3. Lack of data and information-sharing between health and social care professionals Q30. If in your country, there are important differences in relation to post-diagnostic support and care, between what is described in the policy documents (theory) and practices, please outline such differences here. Q31. If there is anything in relation to post-diagnostic support and care that has not been covered in any of the previous sections and that you feel is worth mentioning, please explain it here. PLEASE PROVIDE DETAILS OF THE PERSON WHO COMPLETED THIS QUESTIONNAIRE: NAME: Laura Cook ROLE IN THE ALZHEIMER ASSOCIATION: Policy Officer 18
EMAIL AND PHONE NUMBER: laura.cook@alzheimers.org.uk / 020 7423 3578 THANK YOU FOR YOUR COLLABORATION 19