An estimated 70 000 British Columbians have dementia.[1] Dementia has a deep impact on the lives of individuals with the diagnosis, but it also casts a large shadow over the lives of families, friends, and caregivers. It is often called “a family disease” because everyone experiences some stress watching the decline from dementia.[2] The many clinical impacts of the disease include changes in cognition, emotion, behavior, physical health, function, and social and financial well-being of individuals with dementia and of their loved ones.

The dementia journey is long and challenging. Caring for individuals with dementia means caring for both the patients and the caregivers. The care team extends from the patient and primary care provider to the primary health caregiver, family, friends, community teams, hospitals, long-term care, and palliative care. Another important resource is First Link dementia support, which is offered by the Alzheimer Society of BC.[3]

First Link referrals help physicians and other health care providers connect individuals with dementia and their caregivers to the Alzheimer Society of BC’s programs and services, as well as to community resources. The goal is to help understand the diagnosis and to equip one to better cope with the changes to come. Education helps one to be prepared for the course of the disease, so that nobody walks the journey alone. First Link supports individuals with mild cognitive impairment and all dementia diagnoses.

In addition to general information about dementia, programs and services offered by First Link include:

• Individual support: Ongoing calls to help support and identify changing needs.
• Dementia education: In-person and online educational workshops on a wide variety of topics from diagnosis to end of life, including Getting to Know Dementia, Shaping the Journey, the Family Caregiver Series, and Grief and Loss.
• Support groups: In-person and telephone groups for people in the early stages of dementia and groups for caregivers.
• Minds in Motion: A social and fitness program for people with mild cognitive impairment in the early stages of dementia, to attend with a care partner.
• Information: Brochures, fact sheets, and videos, as well as quarterly newsletters including updates on events in the patient’s area.
• Referrals to other community and health care services as necessary.

Throughout the progression of the disease, First Link clients receive regular, proactive contact from the Alzheimer Society of BC, and the society continues to provide relevant support as clients’ needs change.

The First Link Dementia Helpline is a confidential, toll-free telephone contact with volunteers trained in dementia care. The helpline supports English, Punjabi, Mandarin, and Cantonese languages weekdays, 9 a.m. to 4 p.m.

When someone is referred to First Link by a health care provider, they will receive a call from a trained Alzheimer Society of BC staff member within a few weeks. Ongoing follow-up contact provides information about the disease, help planning for the future, tips for day-to-day living, and support services when needed. A First Link bulletin is distributed every 3 months to keep everyone informed about upcoming support and education programming, including Minds in Motion. The bulletin is regionally distributed for BC.

First Link referrals are associated with improved information on dementia and its progression, and improved access to community resources. A study has shown that people who were referred directly to First Link by health care professionals (direct referrals) received services 11 months sooner than clients who accessed the services themselves (through self-directed referrals). Early intervention helps individuals with dementia plan their own care while they can do so. The referral form is a fillable PDF document (except in the Firefox web browser).

Further information on First Link, referral documents, and helpline information is available below via the First Link website.
—Hetesh Ranchod, MD, FRCPC

First Link resources

Referral information: https://alzheimer.ca/en/bc/We-can-help/About-First-Link-Referrals [10]

Referral form: https://alzheimer.ca/sites/default/files/files/bc/generic_formalrefform_fillable_2018-03-13.pdf [11]

Dementia helpline: https://alzheimer.ca/en/bc/We-can-help/Resources/First-Link-dementia-helpline [12]. English: 1 800 936-6033, Cantonese or Mandarin: 1 833 674-5007, Punjabi: 1 833 674-5003

Bulletins: https://alzheimer.ca/en/bc/News-and-Events/Newsletters-and-updates/First-Link-bulletins [13]

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This article is the opinion of the Geriatrics and Palliative Care Committee, a subcommittee of Doctors of BC’s Council on Health Promotion, and is not necessarily the opinion of Doctors of BC. This article has not been peer reviewed by the BCMJ Editorial Board.

References

1.    BC Guidelines. Cognitive impairment – recognition, diagnosis and management in primary care, 2016. Accessed 4 December 2019. www2.gov.bc.ca/gov/content/health/practitioner-professional-resources/bc-guidelines/cognitive-impairment [14].

2.    Alzlive. Why Alzheimer’s is called the ‘family disease.’ Accessed 26 November 2019. https://alzlive.com/elder-care/family/why-alzheimers-is-called-the-family-disease [15].

3.    First Link. Growing First Link to meet the needs of an aging Ontario, 2015. Accessed 4 December 2019. www.alzhn.ca/wp-content/uploads/2017/10/First-Link-Report.pdf [16].