This extract from the NZ Dementia Action Plan, prepared by Alzheimers NZ, the New Zealand Dementia Foundation, and Dementia NZ, with the voices and input of over 300 individuals and groups is the proverbial canary in the coalmine. It points to inadequate services especially to the elderly, those with disabilities and minorities among others:
‘… New Zealanders living with dementia are still being let down by inadequate services of variable quality, and the current services are not capable of meeting the growing demand, therefore the system is under increasing pressure:
- Current gaps make service improvement urgent – services exist but there are gaps across the whole dementia journey.
- Pre-diagnosis: poor health literacy remains a significant issue and there is no plan or national activity focussed on dementia prevention.
- Timely diagnosis: there is inadequate workforce capability to deliver timely and accurate diagnoses, as well as inadequate support and limited care planning for those who are newly diagnosed.
- Living well: the system is complex and difficult to navigate, care planning is inadequate, community-based living well programmes are hard to access, limited in availability and underfunded. Families are overwhelmed yet respite care is limited and inflexible. Dying with dementia: palliative care services for people living with dementia are poorly developed.
- Access to services is inequitable across urban-rural and District Health Board (DHB) boundaries.
- Access to services is also inequitable depending on which specialty people present to (e.g.: neurology versus older persons’ mental health).
- There are limited ‘by and for Māori services’ for kaumātua based on Te Ao Māori, and other providers are too often unable to deliver services that meet their needs as described under Te Whare Tapa Whā.
- Limited services exist for specific groups such as Pasifika, ethnic minorities and refugees, people living alone, people living with young onset dementia, people with significant hearing impairment, people with intellectual and developmental disabilities, and people living with long term neurological or psychiatric illness.
- The quality of services is variable:
- Services are not quality assured against dementia friendly criteria.
- Services are often task rather than person-centred and often limited to medical solutions and disability support.
- Opportunities for meaningful connection, activity and stimulation are limited or non-existent.
- Responsive behaviours associated with dementia need to be managed without the use of psychotropic drugs.
- Human rights are ignored or overlooked – stigma and discrimination create barriers to accessing services and support, decision-making authority is often denied to people living with dementia or their decisions are not respected, and the statutory model is substituted not supported decision making.
- Population growth makes service development urgent – The number of Aotearoa New Zealanders living with dementia is growing rapidly. There are estimated to be around 70,000 Aotearoa New Zealanders living with dementia in 2020. This is expected to rise to 102,000 by 2030 and by 2050 the number of people living with dementia is expected to have almost tripled to 170,000. Most have family/whānau also affected by the diagnosis.
- Dementia is an important hidden player in the wider health system – Dementia has multiple impacts in terms of lower thresholds for acute hospital presentations, increased lengths of stay, failed discharges, increased need for aged residential care and for higher levels of that care, and health system harms, especially falls and medication harms. Hospitals struggle to treat people with dementia who often emerge with worsened ability to function than when they were admitted.
- Dementia is a major cause of disability and dependency among older adults – Dementia has been estimated to account 11.9% of the years lived with disability due to a noncommunicable disease, and has a significant impact not only on individuals but also on family/whānau, communities and societies. Most people with dementia have other significant conditions affecting their health and wellbeing, adding to the disability and dependency they experience.
- Dementia leads to increased costs – The economic cost of dementia to Aotearoa New Zealand increased by 75% between 2011 and 2016, with the total cost of dementia to Aotearoa New Zealand in 2016 estimated to be $1.7b increasing to $4.6b by 2050. People with dementia and their families/whānau face significant financial impact from the cost of health and social care and from reduction or loss of income.
- Workforce issues are worsening – Significant numbers of additional staff will be needed as the numbers of people living with dementia increase. Recruitment and retention is already a problem given remuneration levels, poor access to education opportunities and an ageing workforce. There is no workforce strategy to make sure there are adequate numbers of people with the right training to deliver quality services for this rapidly growing population.
- Future community expectations will increase, perhaps suddenly – When a disease modifying treatment for dementia becomes available there will be huge demand for it. Any such treatment will be expensive and the system is not geared to respond.