A More Connected Experience
The isolation many experience suggests there is more to do to make society more dementia inclusive.
Scotland is recognised as among global leaders in dementia policy, from our commitment to post diagnostic support (PDS) to the establishment of the Scottish Dementia Working Group (SDWG), the first lived experience campaigning group which has inspired people living with dementia across the globe.
Great strides have been made in brain imaging and accuracy of diagnosis, resulting in the ability to deliver accurate and timely diagnosis and ingoing research has taken us to the cusp of a new generation of treatments.
However, these successes are not yet the experience of everyone living with dementia and their care partners. Lived experience can be lonely, isolated, affected by stigma; with loss, trauma and financial hardship experienced by many. Significant waiting times for assessment and the absence of a seamless diagnostic pathway acts as a barrier to early diagnosis and treatments and inconsistent approaches to commissioning and delivery of post-diagnostic support (PDS) means that people may not receive the support they need, when they need it.
The mental health of those diagnosed with dementia is not always fully recognised. This includes an increased risk of suicide, particularly for those diagnosed when under 65. The isolation many experience suggests there is more to do to make society more dementia-inclusive. Scottish Intercollegiate Guidelines Network SIGN guidelines offer both clinical and human interventions to support mental wellbeing.
For many people, achieving clarity of information, guidance and support about all aspects of life, from health to housing; social care to community participation; arts and cultural opportunities and support for those who are in work when they are diagnosed, is experienced as a confusing and inconsistent maze to be navigated.
For younger people receiving a diagnosis, defined as those under 65, the disruption to work, family life and financial independence adds additional complexity and pressure.
We recognise that people living with dementia and their care partners/unpaid carers are experts by experience; best placed to know what they need and when they need it. Support to develop this expertise can help avoid stress, struggle and the growing sense of loss that a dementia diagnosis can bring.
Acknowledging the expertise of lived experience reflects both human rights principles and person-centred support which places the person at the centre, as an expert in their own experience.
With an emphasis on doing with rather than doing to, high quality person-centred treatment, support and care is evident in both individual and group settings, with people not only active in their own support and care but also in the design and delivery of services, ensuring it meets their needs and ambitions.
From diagnosis to end of life, our ambition is that all dementia diagnosis, treatment, support and care in Scotland is high quality, person-centred and trauma-informed in all settings, which includes:
- Ensuring people have access to information and advice on prevention and early detection of dementia
- Ensuring that culturally appropriate dementia information and services for people from marginalised communities, including those from ethnic minorities and LGBT+ communities, are available and accessible
- Recognising and respecting people’s rights and values and putting people at the centre of care
- Making sure people have equity of access to appropriate quality treatment, support and care that they need, when and where they need it
- Maximising the reach and impact of post diagnostic support (PDS)
- Maximising equal access to Self-Directed Support (SDS) that increases choice of support and care
- Ensuring that targeted supports are developed and implemented to meet the specific needs of communities with additional needs including those with learning disabilities and sensory loss
- Ensuring people are physically comfortable and safe, recognising that housing security and sustainability and the ability to meet rising living costs are not assumed
- Emotional, practical and financial support for care partners and families including bereavement support
- Ensuring people get all the information they need, in a way that is accessible for them, to make informed decisions about their treatment, care, support and housing options
- Ensuring that people have access to dementia-specific palliation.
From here we describe what a more connected approach to dementia can be and what we will work with our partners to achieve.
Irene & Allan’s Story
Hopes and Dreams for the new dementia strategy for Scotland.
Irene: No one should feel so desperately and utterly without purpose or value as I was made to feel. No one should feel so isolated and unconnected to the world around them as me and my family did. No one should rely on good luck to find the right support. If I can do something to prevent this, I will. Everyone on the other hand should know the support and joy of the professionals and organisations and volunteers who gave me back my life. A different life but in so many ways a better one. I’m really looking forward to doing what I can when and where I can to realise this.
Allan: I am classed an unpaid carer for my partner who was diagnosed with Young Onset Dementia 7 years ago when she was 53. I do not see myself as her carer but her support when she needs it.
Since the diagnosis we have learned how I can help her to live as full a life with meaning and purpose. After the initial diagnosis it was really hard to come to terms with what this would mean; being one of the founder members of STAND has led us to meet a number of individuals and organisations that can assist us to fulfil our aim and to ensure that my partner can live a life filled with meaning and purpose and in fact help spread the message that there is life after diagnosis, albeit a different life. I am an active member of STAND and following the registration of the group as a charity I have taken the role of a Trustee.
Stigma affects our perceptions and understanding of dementia through:
- The origins of dementia and the language used until recently; words such as ‘senile’ which are disempowering and negatively impact on all aspects of people’s wellbeing, including presenting for diagnosis and support
- Continued lack of understanding of dementia as a progressive neurological condition rather than an inevitable consequence of ageing
- The lack of effective drug treatments which, at its worst, may affect clinicians’ motivation to diagnose
- Assumptions about the value and rights of people living with dementia, experienced through loss of employment; withdrawal of driver’s licence at diagnosis and the continued assumption of reduced ability and capability.
The difference we need to make
We know that people living with dementia can live full and meaningful lives; active, creative, purposeful and connected to community. Through the life of this strategy, we want to lead a sea change in how dementia is understood and experienced, one where:
- Public awareness and understanding about brain health and dementia is raised and perceptions are changed
- Fear about presenting for and receiving a dementia diagnosis is reduced
What I’d like to see in Scotland is everyone in society to see dementia is just another illness and for there to be no stigma.
I am loud and proud about having dementia, not affiliated to any national dementia organisation. I do a lot of true Co-Research from helping with funding applications onwards. I am also a trustee of two national charities, outside the dementia world as I believe people with dementia should be fully inclusive members of society, not placed in dementia-only buildings.
- The workforce across health, social care and housing increases its understanding of dementia and is better connected
- A diagnosis of dementia is followed with clear, consistent quality information and support options including post diagnostic support (PDS), rehabilitation and other supportive treatments
- Employers have greater awareness of dementia and its impact on employees receiving a diagnosis and those with caring responsibilities, demonstrated by their sign up to programmes such as Carer Positive and Dementia Friends.
In 2019 The Scottish Government commissioned Brain Health Scotland, led by Alzheimer Scotland, to empower everyone in Scotland to protect their brain health and reduce their risk from diseases that lead to dementia. This reflected the increasing evidence that up to 40% of dementias are affected by risk factors that can be modified, similar to the risk reduction messages now widely understood about some heart disease and cancers.
Public and professional interest in brain health has accelerated significantly, as has the scientific and medical understanding of disease processes over the life course. Brain Health Scotland is responding to this by leading development of preventative health services which aim to provide early disease detection and personalised risk reduction plans. The initiative also delivers a health literacy approach that engages the people of Scotland with brain health principles, from primary education programmes to broader public awareness campaigns.
Scotland’s first Brain Health and Dementia Research Strategy was published in July 2021, led by the Scottish Dementia Research Consortium and supported by the Scottish Government. The main focus of the strategy is to test innovative services and facilitate relevant high quality research that translates rapidly into health and social care practice as effectively as possible.
The difference we need to make
By supporting the work of Brain Health Scotland and the key messages of the Brain Health and Dementia Research Strategy, we will contribute to a better understanding of the complex impact of dementia on our brains and promote key messages about how to protect brain health throughout life.
Public awareness that some forms of dementia can be delayed or prevented by modifying life circumstances and lifestyle is increased.
People living with dementia and care partners have opportunities to participate in research, including informing and designing research.
Options for developing robust, multi-disciplinary and multi-agency care pathways, learning from research and practice, are explored.
Specific populations known to be at increased risk are supported to engage with brain health services.
Connections with, and support to, Scotland’s research and academic communities will continue to inform the delivery of this strategy.
We need to support people with the fear about going for diagnosis.
An inclusive, rights-based, accessible and timely diagnosis, with the option to have someone close present, is an important start to someone’s dementia experience. This is particularly relevant for people with sensory loss, including hearing loss where use of British Sign Language (BSL) is required. We need to support people with the fear about going for diagnosis. To help do this the process needs to be accessible, should consider regional differences and best practice, and be person-centred. The experience should be supportive and sensitive, and people should be encouraged to seek diagnosis as soon as possible to maximise their opportunities to live as well as possible with dementia.
Our ambition is that the diagnosis is both person-centred and human rights based including:
- Ensuring that a person-centred diagnosis, one that is timely, communicated sensitively and recognises the person’s goals and preferences, is available for every person with dementia including alternative pathways for diagnosis for people where a regular diagnosis is not appropriate, such as people with learning disabilities
- Individuals and their care partners/unpaid carers and family are supported up to, and throughout the process, recognising the mental health and wellbeing implications of receiving a dementia diagnosis
- Ensuring diagnosis is available and accessible irrespective of age, stage, sensory loss or where people live
- Ensuring stigma and fear around diagnosis are reduced and more people are diagnosed at an earlier stage
- The most effective models for diagnosis are understood and adopted
- Individuals will be respected, their concerns taken seriously and will be assumed to have capacity to ask for and understand a dementia diagnosis.
The difference we need to make
Access to timely, person-centred diagnosis that is consistent and equitable throughout Scotland but allows for flexibility to suit the locality. This includes diagnosis delivered by a broader range of those professionally qualified than current arrangements and delivery of diagnosis in a wider range of settings such as community hubs and care homes.
At the point of diagnosis people will be referred, or directly connected to, post diagnostic support (PDS), in whatever form each person chooses and is relevant to the stage of their disease.
People will be offered a treatment plan with arrangements for regular monitoring and review detailed.
It’s OK Gran, we ken your brain’s broken
My name is Audrey Ross. I was diagnosed with young-onset frontotemporal dementia at the age of 54. My hobbies include walking my dog Bouncer, art, crosswords, jigsaws, quizzes and nature. Being invited to join the Scottish Government Lived Experience Panel was an absolute honour and pleasure for me. Involving people with lived experience of dementia also gives that person a sense of purpose.
People undergoing diagnosis and their care partners/unpaid carers or family have access to emotional support, acknowledging that there is often heightened anxiety or confusion in the lead up to the prospect of a formal diagnosis, as well as mental health consequences and trauma as a result.
A ‘biopsychosocial’ approach to diagnosis and treatment, recognising that, whilst dementia is a progressive brain disease, it affects the whole person.
Health checks for people with a learning disability include early screening for cognitive changes.
Post Diagnostic Support
Awareness of the service is also variable and so extending the awareness and reach of this valuable right is a priority.
Post diagnostic support (PDS) has been Scotland’s flagship policy in dementia for 10 years. However, we know that less than half of those who are entitled to post diagnostic support receive it. Awareness of the service is also variable and so extending the awareness and reach of this valuable right is a priority. The growth of peer support networks, of Meeting Centres, Dementia Friendly Communities and other community supports can all contribute to our ambition to ensure everyone who receives a diagnosis of dementia can access person-centred post diagnostic support. This is replicated in professional networks such as Healthcare Improvement Scotland (HIS) led post diagnostic support network of service managers across Scotland.
The evaluation of the Primary Care Dementia Innovation Sites demonstrated the importance and benefits of connecting post diagnostic support with primary care, from streamlining support for people to seek and receive a diagnosis, to receiving post diagnostic support, to being able to liaise with the general practitioner (GP) to update Key Information Summaries with personal planning and anticipatory care planning information.
The difference we need to make
Post diagnostic support is available and accessible to people for a minimum of 12 months, irrespective of where they live or how old they are.
Post diagnostic support is person-centred and trauma-informed, based on what people want and need at the time they access it.
People can choose how and when to take up their post diagnostic support once they have been informed of the options that are available in their locality. This may include the 5 Pillar Model of Post Diagnostic Support (PDS) delivered by an Alzheimer Scotland Link Worker, participation in a Meeting Centre, peer-led support as part of a Dementia Friendly Community or post diagnostic support delivered by an Allied Health Professional (AHP), Community Psychiatric Nurse (CPN) or other health or care professional. This recognises the central role community networks, health and social care professionals and organisations can play in developing and delivering person-centred post diagnostic support.
Understanding of the purpose, availability and acceptance of post diagnostic support is included in workforce development programmes.
There is equitable access to post diagnostic support irrespective of factors such as the person’s age, disability, ethnicity, residence and ability to use technology to engage with support.
Post diagnostic support (PDS) services are better connected to primary care.
Post diagnostic support should be relevant to the person’s stage of their dementia, for example people may have more moderate or advanced dementia at the time of their diagnosis and so may benefit more from a care co-ordination model of support including Alzheimer Scotland 8 Pillars Model or Advanced Model.
Post diagnostic support services are better connected to primary care.
Post diagnostic support includes self-management support that empowers people to manage their health and wellbeing, day by day, as effectively as possible, including via peer support.
Post diagnostic support data gathering is extended to include the method of post diagnostic support offered and chosen as well as qualitative outcomes delivered via post diagnostic support.
Healthcare Improvement Scotland’s (HIS) iHub’s Quality Improvement Framework, which includes detail about key elements of quality post diagnostic support such as guidance about Power of Attorney, is universally adopted as the quality measure for post diagnostic support.
Living the Best Life Possible
The end of post diagnostic support (PDS) should represent a transition to connections and support that enable people to live the best life possible, including being able to remain in their own home for as long as they want to. Whilst this may already be in place where Meeting Centres and Alzheimer Scotland Link Workers have connections to local services, this should be the norm at the end of post diagnostic support (PDS).
We know that homes that are designed or adapted to support daily living along with families and communities, supplemented by well co-ordinated person centred health and care support, are core to achieving this.
The Hospital Experience
Currently, one in four people at any one time in hospital will have dementia. People living with dementia often experience longer hospital stays, delays in leaving hospital and reduced independent living. The pandemic has had a disproportionate effect on people with dementia in hospital.
Though delirium is increasingly recognised as a risk factor for developing dementia, it is also recognised as a risk for worsening dementia. It is common in hospital patients and for people living in care homes and much more common for people when they become ill. It can be mistaken as worsening dementia and as such, is a source of distress for family members. There are evidence-based non-pharmacological measures around which partners have built an evidence base.
A small number of people will also be admitted to specialist dementia wards. Research tells us that the lack of integration, including communication and support to enable a person’s preferences to be upheld, between these specialist hospital environments and wider social care, health and housing systems can result in people becoming ‘stuck’ in hospital, missing a safe return to home or transition to a more appropriate community setting.
Evidence shows that effective care co-ordination can lead to better outcomes for people living with dementia and their care partners, such as fewer attendances at Accident and Emergency and fewer hospital admissions. The 2022 independent evaluation of Healthcare Improvement Scotland’s (HIS) whole system care co-ordination programme stated the Programme should serve as a good practice example for Dementia Care Co-ordination nationally in Scotland.
Healthcare Improvement Scotland (HIS), Mental Welfare Commission (MWC), Scottish Patient Safety Programme (SPSP) in Acute Care and national frailty programmes continue to highlight the need for support to improve person-centred planning in hospital settings and the engagement of care partners. This approach to care planning supports the de-escalation of stress and distress, to avoid re-admission, or admission to specialist dementia units, enabling timely discharge and effective transitions of care.
The difference we need to make
People living with dementia have equity with other diagnoses in accessibility to high quality treatment and support to live the best possible life with dementia.
People living with dementia and their care partners are able/supported to stay as connected and active in and with their community as they choose.
People with dementia and their care partners have the support of multidisciplinary and multiagency teams to co-ordinate their care and support and ensure their general health and mental health is supported. This includes regular follow-ups with their general practitioner (GP) practice as well as clarity of communication between services.
Community networks and organisations, such as Meeting Centres and Resource Centres, are accessible, inclusive and sustainable, recognised for their role in supporting people and their families, particularly in the early stages of dementia.
People are supported to make informed choices about their home, including how to plan a timely move or stay in their own home for as long as possible, with guidance about how to make suitable home adaptations.
Arrangements to access home adaptations are clear and accessible, regardless of tenure.
Reflecting Getting It Right For Everyone (GIRFE) principles and Dementia Scottish Intercollegiate Guidelines Network (SIGN) guidelines, people are supported to navigate through treatment, support and care that will uphold their quality of life and what’s important to them, which might include: employment; legal procedures to express preferences; their home and future housing options including adaptations; peer support and community networks, arts and culture; staying well, both physically and mentally; care at home and care when they can no longer live at home.
People are informed about Self-Directed Support (SDS) options when their need for care is identified, recognising the role of care partners in supporting a direct payment and including the purpose of Option 2 to maintain choice and control when capacity is reduced.
The developing Integrated Health and Care Record is used to better co-ordinate support and communication about and between services.
Support and care is a partnership between the person living with dementia, their care partner and the identified professional, throughout the dementia experience.
Standards of Care for Dementia in Scotland, Scottish Intercollegiate Guidelines Network (SIGN) Guidance, Getting it Right for Everyone (GIRFE) and the need for anti-discriminatory practice and cultural sensitivity are familiar to practitioners, service planners and providers and used as the benchmark for commissioning and good practice across housing, care, health and community services. Sector-based workforces access and understand evidenced based biopsychosocial interventions as part of dementia education and training.
Scotland’s 10 Dementia Care Actions are adopted as a benchmark for good practice in dementia treatment and care in hospitals.
Across health, social care and housing we maximise the use of new and emerging health and technology innovations, including citizen tech such as Alexa, to help enhance people’s lives, complementing the crucial importance of skilled and compassionate human interventions.
Advanced dementia is associated with the later stages of the illness when the complexity and severity of dementia-related changes in the brain lead to recognisable symptoms associated with dependency and an increase in health and social care needs and risks. Scotland’s national dementia Scottish Intercollegiate Guidelines Network (SIGN) guidelines detail that people at this stage need expert health care, more intensive social work assessment and support, nursing and palliative care assessments together with insights from carers and others, particularly when the person has difficulty communicating their own needs and emotions. Advanced dementia involves living, sometimes for years, with advanced illness and multiple health conditions and the advanced dementia continuum includes the terminal stages of death and dying.
The transition to, and the experience of, advanced dementia is both complex and challenging. In the later stages of advanced illness, healthcare needs are increasingly complex and palliative.
The prevalence of advanced dementia among the dementia care home population based on evidence reviews is around 40%
The number of options that support family caring begin to narrow. For example, people with advanced dementia are often discharged from standard day care which is not designed for their complex needs. For families who have relied on this there may be no suitable alternative. Advanced dementia day care is possible and there have been successful pilots in Scotland, such as Alzheimer Scotland’s Enhanced Sensory day care in Dumfries.
For someone with advanced dementia, communicating with and understanding others becomes extremely challenging. They may feel very isolated and even scared but may not be able to make others aware of how they are feeling.
We know that approximately a third of people with dementia in Scotland are in residential care; and those residents make up about 65% at least of the overall care home population.
The prevalence of advanced dementia among the dementia care home population based on evidence reviews is around 40%. The application process and cost of a care home are a source of confusion and concern to families and one that, whilst not unique to dementia, disproportionately affects people living with dementia and their families.
While we have good information on the high percentage of people with advanced dementia in care homes, we need more information on issues like how many people at this stage of the condition live at home, alone and/or without close family support, which could mean that symptoms are advancing without being identified.
The difference we need to make
Specialist dementia training, benchmarked against the Promoting Excellence Framework, for staff working in housing, care at home services, care homes and hospital settings is developed and delivered from induction to Continuing Professional Development, appropriate to role.
Training in dementia-specific palliative care and access to palliative care guidelines are available to all health and care staff caring for people with dementia.
Care pathways for advanced dementia are informed by, and connected to, Getting it Right for Everyone (GIRFE) and the wider Scottish Government Care and Wellbeing Portfolio programme.
Enhanced level knowledge and skills are evidenced in Advanced Care Planning processes and plans.
The role of Multi-Disciplinary Teams (MDTs) including dieticians and speech and language therapists in managing common conditions such as weight loss and swallowing difficulties, is embedded in care planning and carer support.
Non-pharmacological interventions may improve cognition, social engagement and quality of life and decrease stress and distress. Reminiscence Therapy, Validation Therapy, Cognitive Stimulation Therapy and, Playlist for Life, form part of education, training and improvement practice in residential settings.
Housing providers and arrangements for housing adaptations become more proactive and preventative to both prevent unnecessary hospital admissions and support people to return home following hospitals stays.
The value of the developing Integrated Health and Care records to improve co-ordination is maximised.
People living with advanced dementia in care homes have equitable access to multi-disciplinary co-ordinated support, including rehabilitation and other Allied Health Professionals (AHP) specialisms, as those living in their own homes.
People living with dementia and their care partners have equity of access to future care planning, palliative care, care around death and bereavement support.
My Health, my Care, my Home based on the Getting it Right for Everyone (GIRFE) is adopted by care home providers as a benchmarking framework for good practice.
Recommendations for the reform of mental health and incapacity law are maximised to empower people living with advanced dementia to express and have their preferences respected in hospital and care settings.
A greater number of long term care options for people living with dementia are explored and costed with partners, increasing choice and control about how long term care needs are met.
Quality, accessible information and advice on the cost of residential care for self-funders is freely available to all people who require it.
The growth of dementia awareness, dementia-friendly communities and specialist dementia support in Scotland is to be celebrated. Despite these positive developments, unpaid care remains essential to
20% of female carers have gone from full-time to part-time employment.
how care is provided in Scotland and we recognise the significant contribution, value and expertise that care partners make on a regular basis.
Scotland’s Carers Strategy (2022) indicates that 700,000-800,000 people cared for someone in the years before the pandemic, contributing the equivalent of £13.1 billion of care per year. We already know that 60%-70% of those who care for someone living with dementia are women. This strategy recognises the contribution care partners/unpaid carers make to dementia care, and the impact this has on them personally, as a result.
Caring can be a positive experience, especially for those with good support and connections in place. However, caring for someone can often lead unpaid carers/care partners to experience negative impacts on their health, wellbeing and financial security. 20% of female carers have gone from full-time to part-time employment; others leave work or retire early as a result of their caring responsibilities.
Care partners/Unpaid carers have told us that, following a diagnosis of dementia, there can be trauma both for the person living with dementia and their care partner/unpaid carer, including loss of identity, financial freedom and changes to employment. Life can often feel less spontaneous and more isolating for care partners/unpaid carers. ‘Living grief’ or ‘anticipatory grief’ are terms used to describe the sense of daily and growing loss experienced when caring for someone living with dementia. This is acknowledged in the new Dementia Scottish Intercollegiate Guidelines Network (SIGN) guidance.
The Review of Adult Social Care that informed the early development of the National Care Service acknowledged that ‘unpaid carers are integral to good care, so it is important that we recognise the value they bring and ensure they are included as equal partners in the team of people who together plan and provide support and care. The phrase “nothing about me without me” should apply equally to people who use services and their unpaid carers’. Amongst other recommendations specific to unpaid carers, the report recommends an improved complaints process.
Caring also does not stop just because someone goes into a care home. Attachment, understanding the uniquely personal triggers for stress and distress, knowledge about likes and dislikes and how best to uphold choice are all part of unpaid care that remains wherever the person lives. The proposed Anne’s Law is recognised as upholding the right to a family life for those living in, as well as those caring for, someone living in a care home.
Continued caring also applies to hospitals. It is critical that care partners/ unpaid carers’ rights to be involved in discussions about the ability to provide care at the hospital discharge planning stage are communicated to families and upheld.
The Carers (Scotland) Act 2016 aims to ensure that unpaid carers have choice and control about what care they can provide and can access support, including preventative support, to help ensure the caring role is manageable. The Act extends and enhances the rights of carers to help improve their health and wellbeing, so that they can continue to care, if they so wish, and have a life alongside caring.
Our National Dementia Care Standards mean people who have recently been diagnosed and their carers must be provided with educational resources. However, written information on its own is only a starting point. Care partners/unpaid carers and families need dementia education and practical skills training, delivered at the right time for them with sensitivity. Sensitivity is needed to support complex emotions associated with grief experiences and other psychological impacts. Trauma-informed approaches to education; signposting to navigate care systems; legal and financial mechanisms to support increasingly vulnerable relatives are all core to dementia-specific carer education.
Innovations such as the Carer’s Academy in both NHS Ayrshire and Arran and Lanarkshire, developed in partnership with Alzheimer Scotland Centre for Policy and Practice team at University of the West of Scotland offer an example of a co-designed programme of skills training, delivered by a multi-disciplinary and multi-agency team, integrated with local services, that is being adopted more widely across Scotland.
The difference we need to make
Post diagnostic support (PDS) for care partners/unpaid carers as well as people living with dementia covers both practical issues such as housing options and adaptations that support people to stay in their own home, as well as emotional support in recognition of the ‘living grief’ and bereavement that care partners and families experience.
Following a Self-Directed Support (SDS) assessment, flexible care and support is available to all unpaid carers/ care partners, including ‘day services’ and respite.
Advice and guidance on health and technology innovations and solutions are embedded in post diagnostic support and reviewed with people and their care partners through their progress through dementia.
The knowledge and skills to upskill care partners in therapeutic support held within the Allied Health Professional (AHP) community is widely shared through Meeting Centres, Dementia Resource Centres, Carers’ Centres and Dementia Friendly Community Networks.
People living with dementia and their care partners/unpaid carers are informed of and supported to access all Self-Directed Support (SDS) options where this is appropriate and identified through the support plan.
Local assessment of care partners’/unpaid carers’ needs must, in common with assessment of the needs of people using social care support services and supports, better involve the person themselves in planning support, including when their caring role ends.
Carer education is recognised as an investment in care partners/families which will support people living with dementia to live the best life possible.
Access to independent advocacy is widely available and publicised across dementia services and community networks.
The right to Scottish Carer’s Assistance is realised by unpaid carers/care partners.
A care Partner experience with his late father, some of the hidden family issues caused by dementia and the importance of the input from those with lived experience of caring for someone living with dementia.
My father suffered from dementia caused by alcohol (ARBD or Korsakoff’s) and over a period of around 10 years.
After my father passed away, I also dealt with and supported my sister-in-law who also became ill with dementia. I discovered that her weight loss and other issues were due to not eating well.
The move to get some lived-in experience of dementia is so vitally important, the effects and impacts that it has on the people who are looking after a family member suffering dementia are in my experience quite devastating and can end up in severe mental health challenges and physical wellbeing.
I regret to add that it also affects how that person is then regarded by family members; my father was a great dad to us all when we were growing up in West Pilton. A hard working man who had seven kids who were raised well.
There is a growing interest in understanding more about the rare genetic conditions, such as Sanfillippo Syndrome, that affect children and cause symptoms of dementia including memory loss, confusion, trouble concentrating and communicating. Personality and behavioural changes and emotional issues, such as fear and anxiety, also impact children who are affected. Through our engagement with the research community and affected families, we will consider with colleagues and partners how best to engage with and respond to emerging findings.
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