Mr. Speaker,
This morning I rise to provide my Honourable colleagues and the people of Bermuda with an update on the six-month Dementia Care Services Pilot Programme launched by the Ministry of Youth, Social Development and Seniors in October 2023. This pilot programme was implemented to ensure persons living with dementia who are uninsured or underinsured have access to dementia care community support services.
Mr. Speaker,
Dementia is an umbrella term for degenerative, terminal brain diseases that impact a person’s ability to perform daily activities and make decisions. Dementia is becoming a global public health issue due to ageing populations and risk factors, and Bermuda is part of this trend.
In Bermuda, we have an estimated 1,500 persons living with dementia. However, when we think of persons impacted by the disease the number of persons affected by dementia is much higher than the number of persons diagnosed as dementia care services are usually provided for by family members. As such, it is critical that dementia care services not only support persons with dementia but also support those persons who are their carers.
Mr. Speaker,
International best practice supports the development of dementia navigation programmes that assess, educate and support persons with dementia and their carers to help ensure support a quality of life over the disease progression. These programmes, such as the Care Ecosystem model out of the University of California San Francisco, have proven beneficial in reducing hospital admissions and increasing the quality of life for persons with dementia and their caregivers.
Mr. Speaker,
Due to the lack of dementia navigation and support services and charitable services that financially assist, family carers tend to experience a strain in maintaining persons in their homes. Also, poor support of family carers can result in hospitalizations, care crisis scenarios and earlier admission to facility-based long-term care. It is also critical to note, that due to the deficits in available long-term care beds and daycare, persons with dementia requiring placement must remain in the community longer placing additional strain on existing supports and increased risk. Ageing and Disability Services struggle to support these clients due to their limited access to specialist support services.
Mr. Speaker,
Consequently, in November 2023 I shared with this Honourable House, that the Ministry of Youth, Social Development and Seniors funded a six-month dementia care services pilot programme. The purpose of this pilot was to provide support and intervention services to persons with dementia and their caregivers while assessing the need and impact of such a programme.
The specialized support and intervention services provided under the pilot programme included environmental assessments, cognitive screening, cognitive compensatory strategies, personal care planning, case management, caregiver education and crisis intervention and prevention.
Mr. Speaker,
I also shared previously with this Honourable House that NorthStar Dementia Ltd., a local dementia-specific care provider, was contracted to undertake the six-month pilot programme commencing in October 2023 to offer these services. March 31st 2024 marked the end of the pilot programme and we are pleased to report that data was collected and collated for services provided during that period.
Mr. Speaker,
A total of 50 persons with dementia who were either underinsured or uninsured were provided dementia care services during the pilot along with their carers. The following are some of the key findings from the pilot programme:
•71% of the clients held FutureCare Insurance, 4% were uninsured and the remainder had private health insurance coverage.
•87% were unable to contribute financially to the cost of services.
•45% of persons referred did not have a formal diagnosis of dementia.
•71% of the primary caregivers were female and predominately children of the person with dementia.
•49% of caregivers rated their current stress levels as ‘severe’; and
•5% of clients had no next of kin or family support available.
Mr. Speaker,
For the participants in the pilot programme, 46% required an initial consultation only which includes identifying signs and symptoms of dementia, guidance on how to get a diagnosis, identifying needed and available resources and the next step recommendations. Another 46% required the full comprehensive dementia assessment plus follow-up case management services, including crisis intervention and prevention.
Despite the short period for the pilot assessment, all programme performance measures obtained positive results from clients. Some of the feedback included the following:
•90% of the clients found the services provided as beneficial (10% somewhat beneficial)
•60% stated they are much more knowledgeable about dementia in general.
•75% of the caregivers stated they are somewhat less stressed than before receiving the services.
•55% stated their confidence had increased to implement care strategies.
•55% indicated they were more aware of local resources to help persons with dementia and their carers.
•75% of the careers felt somewhat prepared to meet the caregiving needs of their loved one, with 25% stating they felt very prepared post engaging in the dementia pilot.
Furthermore, Mr. Speaker,
The following key actions occurred among clients:
-70% had a formal diagnosis by a medical professional.
-40% of the clients put a health directive in place.
-75% put an enduring power of attorney in place; and
-60% had their mental capacity assessed.
These actions are critical as obtaining a diagnosis of dementia is key so that you and your loved one know what lies ahead and are prepared. Advanced planning is necessary to ensure those diagnosed can make their own decisions for as long as possible and have their wishes and preferences known and upheld when no longer able.
It is encouraging to see that when people have access to support services, progress occurs in the areas that are essential to help ensure quality of life.
Therefore, Mr. Speaker,
As a result of the positive outcomes obtained during this dementia care services pilot programme, the Ministry of Youth, Social Development and Seniors has extended the pilot for an additional 6 months, from June to November 2024. The data shows that the need is evident and growing. Also, moving forward the Ministry is committed to identifying sustainable funding for the provision of these services.
Mr. Speaker,
This is not the only action the Government is taking to address dementia in our community. My Honourable colleagues may be aware that June 15th, 2024, was recognized as World Elder Abuse Day, and the theme adopted by Ageing and Disability Services this year was ‘Dementia, Staying Connected’. This was an important theme as those persons with cognitive impairment and care needs are more at risk of abuse and neglect.
As a result, the annual Seniors Tea held by Ageing and Disability Services hosted over 100 seniors who received information on dementia, risk reduction and support services available through presentations by Action on Alzheimer’s and Dementia and NorthStar Dementia. In addition to the Seniors Tea, in recognition of World Elder Abuse Day, I made a virtual proclamation on June 14th while officers from Ageing and Disability Services shared on the radio stations about senior abuse and the importance of supporting persons with dementia.
Additionally, Mr. Speaker,
A dementia action plan is being developed under the National Seniors Strategy which I will share more about in a future Ministerial Statement. The action plan is being prepared collaboratively with the Bermuda Health Council and includes our community and government partners to ensure we can collectively identify and implement comprehensive and targeted solutions to help address the needs of persons with dementia and their carers in Bermuda.
Mr. Speaker,
In closing, a dementia diagnosis can be daunting for the person impacted and their family so having affordable access to a resource for education, guidance and support is critical. The Ministry of Youth, Social Development and Seniors is committed to working with our public and private sector stakeholders to expand and improve dementia services and support. We thank these partners and look forward to our ongoing collaboration.
Thank you, Mr. Speaker.