The single most important thing that can happen to a person and their family when a diagnosis of Dementia is given is inclusive, state funded post-diagnosis support and services, including assessments,rehabilitation and if eligible, benefits, which continue throughout their journey with the person with Dementia and their carers/family.
From mine and others experiences allowing a person to fall into that black hole is a form of abuse.
With other chronic terminal diseases there will be someone to take you to a side room with the obligatory cup of tea, who will discuss your diagnosis, sort out assessments and services and develop a care plan to enable you to continue to live with your diagnosis.
Something as simple as the A Good Life with Dementia course where people living with dementia are the tutors can have a major impact on a persons journey with Dementia.
The plan should also have a rights based approach under the UN Conventions and remove the medical model of healthcare that leads to the BPSD pathway of chemical/physical restraint, sectioning/safeguarding and involuntary care.
To enAble and engage a person with Dementia and their carers/family not disAble and disengage so that they may live their lives within the reducing boundaries of their particular Dementia.
What about benefits. Well the UN CRPD states
Article 28 – Adequate standard of living and social protection
a) To ensure equal access by persons with disabilities to clean water services, and to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs;
b) To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes;
c) To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care;
d) To ensure access by persons with disabilities to public housing programmes;
e) To ensure equal access by persons with disabilities to retirement benefits and programmes.
Ideally, we have a system whereby upon diagnosis you qualify for benefits BUT not immediately for payments.
Between your diagnosis and the next Neurologist appointment you should see an Occupational Therapist, Physiotherapist, Dietitian, Speech and Language Therapist, have a hearing and sight test at your local Hospital;
Why is Dementia different, we may suffer at times but do we want to be seen as suffers? For me I would rather be seen as a fighter, empowered to live life within the limits of my diagnosis.
Why must we be subjected to the negative narrative of the media and the abuses of a system that ignores our rights.
As the words of your diagnosis are spoken, your life and that of your family changes forever.
The challenges vary depending on the age you are diagnosed, other medical conditions, whether you still work, have a mortgage, young family, the list goes on, running around in your head.
You cannot hear what the Doctor is saying anymore, the media perceptions of Dementia rear up, fear and anxiety take over and the metaphorical dark hole beckons.
Excerpts from various UN declarations:
6. Disabled persons have the right to medical, psychological and functional treatment, including prosthetic and orthotic appliances, to medical and social rehabilitation, education, vocational training and rehabilitation, aid, counselling, placement services and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration.
5. Older persons should be able to live in environments that are safe and adaptable to personal preferences and changing capacities.
Rehabilitation
23. The term “rehabilitation” refers to a process aimed at enabling persons with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychiatric and/or social functional levels, thus providing them with the tools to change their lives towards a higher level of independence. Rehabilitation may include measures to provide and/or restore functions, or compensate for the loss or absence of a function or for a functional limitation. The rehabilitation process does not involve initial medical care. It includes a wide range of measures and activities from more basic and general rehabilitation to goal-oriented activities, for instance vocational rehabilitation.
Resources
The Fundamental Right to Quality Social Care: The Challenges of the Care Sector and its Workforce
Global Rehabilitation Alliance launched in Geneva
Opinion: Why dementia should be treated like all other NCDs
World Heal Organisation : Global Action Plan on the Public Health Response to Dementia 2017 – 2025
The Department of Health and Social Care, Policy Paper, 8 Jan 2016 : Joint declaration on post-diagnostic dementia care and support
An interim report prepared for the Faculty of Psychologists working with Older People and the Dementia Action Alliance
When The Fog Lifts 