Tiffany W. Chow, MD, MSc, Baycrest Health Sciences Rotman Research Institute, and Ross Memory Clinic; University of Toronto Depts. of Medicine (Neurology Division) and Psychiatry (Geriatric Psychiatry Division).

Abstract
Much of the published clinical research in dementia has focused on diagnostic biomarkers and neuroimaging analyses that are not yet validated for routine clinical practice or on unsuccessful clinical drug trials. Primary care providers can nonetheless make a significant difference in the management of patients with dementia and their families, based on appropriate referrals of non-Alzheimer's dementia cases to specialists and supporting informal caregivers.
Frontotemporal degeneration, a non-Alzheimer's dementia that strikes in the 6th decade of life, provides many opportunities for the entire healthcare team to educate and back families up through a harrowing neurodegenerative illness. This paper is intended to highlight for primary care physicians what can be done and how to accomplish it through a team approach. Some concepts, such as a switch from medicalized views of "behavioural and psychiatric symptoms of dementia" to "Responsive Behaviours" can be generalized across dementia etiologies, but the age at onset and marked social disability and dysfunction caused by frontotemporal degeneration warrant some additional guidelines to assure the safety and highest quality of life possible for the patient and those around him. In particular, refitting a day program to accommodate clients with frontotemporal degeneration and attending to the needs of children who find themselves in informal caregiver roles are addressed.
Keywords: caregiver, dementia, frontotemporal dementia, primary progressive aphasia.

Mary A. Corcoran, OTR, PhD, Professor of Clinical Research and Leadership, The George Washington University, School of Medicine and Health Sciences, Washington, DC, USA.

There is an average delay of 20 months between the first recognition of symptoms of Alzheimer’s disease or a related disorder (ADRD) and the seeking of physician help. One reason for this delay is tendency for families to miss early symptoms until the onset of behavioural disturbances. Families may provide more timely accounts with prompted questions. It is important to diagnose cognitive impairment early since there are potential benefits to early treatment. The purpose of this article is to help guide caregivers in identifying a list of symptoms that reflect first indicators of ADRD, based on a study of 68 spouse caregivers of patients with ADRD.
Key words: Alzheimer’s disease, dementia, caregivers, diagnosis, primary care.

Ellen Costello, PT, PhD, Assistant Professor of Physical Therapy, The George Washington University, School of Medicine and Health Sciences, Washington, DC, USA.
Mary A. Corcoran, OTR, PhD, Professor of Clinical Research and Leadership, The George Washington University, School of Medicine and Health Sciences, Washington, DC, USA.

Bathing individuals with dementia has been reported as one of the most difficult activities of daily living and often results in unwanted behaviours. A review of the literature on bathing practices for those with dementia resulted in few empirically tested bathing techniques. Based on this review and the authors’ clinical experience, the following guidelines are presented: (1) consider a towel/bed bath in lieu of a shower/tub bath—be flexible; (2) educate the caregiver (improved outcomes are noted)—communication is key; and (3) optimize the environment to meet the needs of the individual and to maintain safety.
Key words: dementia, Alzheimer’s disease, bathing, caregiver, hygiene.

Sylvia Davidson, MSc, BSc, Dip Ger, OT Reg.(Ont.), Psychogeriatric Resource Consultant, Toronto Rehabilitation Institute, Toronto, ON.

Caregivers frequently struggle to manage challenging behaviours associated with dementia, often without a good understanding of why these behaviours occur. This article presents a simple framework to help build understanding as well as a systematic approach to dealing with resistance to care.
Key words: dementia, caregiver, systematic approach, understanding behaviour, resisting care.

Elsa Marziali, PhD, Professor and Schipper Chair, Gerontological Social Work Research, University of Toronto and Baycrest Centre for Geriatric Care, Toronto, ON.

An internet-based psychotherapeutic support group for family caregivers of persons with dementia was developed in a series of pilot studies and evaluated in a feasibility study with 34 participants. A user-friendly website was developed that included video conferencing in two formats: group and one-on-one. Following 10 professionally facilitated sessions, each group evolved into a web-based self-help support group. Six-month follow-up interviews showed overall positive participant responses with regard to learning to use computers, negotiating the website, providing mutual guidance and support, and improving management of caregiver burden and stress.

Key words: internet, caregiver, support groups.

Introduction
Family caregivers, largely women, provide the health and social care for dependent family members who have long-term chronic illnesses. Family caregiving can span many years depending on the stage of illness progression and the family’s resources for managing the needs of the care recipient. Caregiver stress and negative health outcomes are common. Intervention programs for family caregivers typically focus on a) support and/or educational groups; b) individual psychotherapy; c) interventions focused on the care recipient such as respite care; or d) combinations of two or more of these approaches. Most models of intervention produce small-to-moderate improvements in caregiver stress, depressive mood, subjective well-being, and coping ability.^1-3 Intervention programs are delivered face-to-face in either group or individual formats and are either clinic based or provided in the home of the caregiver or care recipient. Providing similar services using technology such as the Internet presents significant challenges.

E-Health Programs for Family Caregivers
Technology has been used in the past to enhance intervention strategies with family caregivers of persons with dementia. ComputerLink is an Internet-based support network including a public bulletin board, private e-mail, and a text-based question-and-answer forum facilitated by nurses.^4,5 The participants benefit in the short term but participation lags in the long term. REACH (Resources for Enhancing Alzheimer’s Caregiver Health),⁶ a comprehensive multisite research program, evaluated the benefits of interventions designed to enhance family caregiving for Alzheimer’s disease and related dementias. In addition to face-to-face support services, two of six participating sites used digital telephone systems to enhance the delivery of information and consultation to caregivers. The Internet was not used for service delivery in any of the REACH programs. Overall, the intervention programs showed benefits to caregivers in terms of reduced stress and higher skill acquisition.

Virtual Support Groups
Our intervention program for dementia caregivers was developed through a series of pilot studies and subsequently evaluated in a feasibility study implemented in two remote areas: Timmins, Ontario and Lethbridge, Alberta. For the pilot studies, three groups of six spousal caregivers agreed to participate with informed signed consent. The groups were facilitated by two experienced social workers, initially in face-to-face format and subsequently via Internet-based video conferencing. The overall aim of the intervention was to decrease the amount of stress experienced by the caregivers as well as enhance their knowledge and skills in managing the care of the dependent relative. The professional facilitators provided the intervention online for 10 sessions, and continual feedback was solicited from the participants regarding both the technical and clinical aspects of the program.

The pilot studies yielded several modules. The first was an easy-to-use, password-protected website with links to a) online disease-specific information handbooks and self care strategies for the caregiver; b) e-mail; c) a question-and-answer forum; and d) video conferencing for one-on-one communication or virtual group interactions. Secondly, we used an intervention training manual that included a theoretical framework and strategies for facilitating an online virtual group. Next, a computer training manual presented a simplified way of understanding the basic steps for using computer hardware and software (Figure 1).

These program modules were used to implement the feasibility study. In all, 34 caregiver-care recipient dyads were recruited (17 at each site with five to six caregivers of persons in each of three disease groups--Alzheimer’s, Parkinson’s, and stroke). With informed, signed consent the caregivers agreed to baseline and follow-up interviews as well as having the video conferencing sessions archived for subsequent analyses. Technicians at each site installed computer equipment and software in the homes of all participants and used the computer training manual to train the users. A clinician at each site was trained to facilitate the groups according to the intervention training manual. Subsequent to the 10 facilitated sessions, in each group a member assumed the facilitator role and the groups continued to meet weekly for an additional period of three months. Research assistants interviewed the caregiver participants in their homes prior to participating in the online group intervention and six months later.

Caregivers’ Responses
At six month follow up, over 90% of the caregivers reported benefiting from their participation in the virtual support group either “extremely” or “very” positively. They formed strong, mutually supportive bonds within the group and acquired new knowledge and psychosocial support that enhanced their caregiving role functions. All reported a decrease in levels of stress associated with caregiving and several reported that their participation in the group supported a decision to delay admission of their family member to institutional care.

When asked about their experiences using the website for communication, 78% indicated that it was very easy to use. When asked what they liked most about the website, some of the caregivers responded “that it was accessible,” and appreciated the opportunity to “have visual contact with other group members.”

Conclusions
Overall, the project results demonstrated that an online, video conferencing based intervention program for caregivers is feasible. The older caregivers with no prior experience with computers readily learned to manage both the hardware and software. This program is replicable because of the emphasis placed on careful development and evaluation of both the clinical intervention and the “Caring for Others” website through which it was delivered.

This project was supported by grants from CANARIE, Canada, Bell Canada University Laboratories at the University of Toronto, Canada, and the Katz Centre for Gerontological Social Work, Baycrest Centre for Geriatric Care. Renee Climans and Arlene Consky, social workers at the centre, provided clinical expertise throughout the implementation of the project.

References

1. Bourgeois MS, Schulz R, Burgio LD. Interventions for caregivers of patients with Alzheimer’s disease: a review and analysis of content, process, and outcomes. Int J Aging Hum Dev 1996;43:35-92.
2. Sörenson S, Pinquart M, Duberstein P. How effective are interventionswith caregivers? An updated meta-analysis. Gerontologist 2002;42:356-72.
3. Schulz R, O’Brien A, Czaja S, et al. Dementia caregiver research: in search of clinical significance. Gerontologist 2002;42:589-602.
4. Brennan P, Moore S, Smyth K. The effects of a special computer network on caregivers of persons with Alzheimer’s disease. Nursing Research 1995;44:166-72.
5. Payton FC, Brennan PF. How a community health information network is really used. Communications of the ACM 1999;42:85-9.
6. Schulz R, Burgio L, Burns R, et al. Resources for enhancing Alzheimer’s caregiver health (REACH): overview, site-specific outcomes, and future directions. Geronologist 2003;43:514-31.

André Tanguay, MD, Chief Physician, Pavillon Hubert-Maisonneuve, CHSLD Drapeau-Deschambault, Rosemère, QC.

A common theme in dementia is misunderstanding--patients with dementia are confused in their thoughts, about the people around them, and by their environment. Furthermore, the patient's family should not be astounded by the seemingly different viewpoints of professionals. In dementia, understanding is of the utmost importance between professionals and family caregivers, and delivering the facts in a clear manner is essential. Striving for this goal, the training tool presented in this article allows the factual understanding of the natural progression of Alzheimer disease. Clinical data and 13 grades are charted within a single table to allow optimal understanding of this disease.
Key words: Alzheimer disease, caregivers, GDS-FAST, training table, MMSE.

Currently, more than one in 10 Canadians is over the age of 65. By the year 2021, it is estimated that this number will increase to almost 18% of the population or 6.7 million people. Approximately 80% of eldercare is provided by family members. The Berger Monitor has estimated that there are 4.5 million caregivers in Canada who spend about $100 million a week--$5 billion a year--on the incidental expenses of caregiving.1 This doesn't include the inevitable emotional stresses of caregiving, and their attendant physical side effects.

Enter Karen Henderson, a woman who spent 14 years caring for an elderly father, frustrated and overwhelmed by the lack of available resources for caregivers. In her own words "If I had known back in 1986 what I know now about caregiving, I could have saved myself considerable worry, frustration, anger, illness and guilt…I know I would have been a healthier, more effective caregiver." Karen's father passed away in April of 2000, but not before his experience had left an indelible impression and formed a sustaining passion.

Karen, who has a background in sales, marketing and adult education, took her experience and launched The Caregiver Network, a combination information resource, service directory and support network. CNI, the first program of its kind in Canada, was initially launched in 1996 as a website, and soon began registering hits from all over the world. Recently, Karen has launched a second website, How to Care.

The Caregiver Network site provides a comprehensive list of support groups, nursing homes, federal and provincial agencies and a medium for caregivers to express their thoughts and feelings. There are sections detailing the importance of advance directives, power of attorney and substitute decision-making, along with contact numbers for the Public Guardian and Trustee's office. The site also has contacts and information on geriatric day care programs, support for caregivers and forums on a variety of diseases of the elderly. One of the most compelling resources on the site is Karen's personal diary, On my mind, which details her thoughts and feelings during the period of care for her father, who suffered from dementia and died in a long-term care facility.

The second website, How to care, provides more detailed health and support information on a variety of issues that a caregiver may face. According to the site, "How to Care is here to help you manage the realities of caring for others and yourself by supplying practical, portable information on the issues we know you will confront." The topics are divided into sections on 'Day to Day,' 'Conditions/Diseases/Situations,' 'Help/Support,' 'Practical Solutions,' and 'Communication.' Each section is further subdivided into topics such as 'Incontinence,' with a brief glossary of terms, definition and relevant information for the caregiver on managing some of these issues.

The services provided by the Caregiver Network and How to Care, go beyond the web resources. Karen also publishes a quarterly newsletter The Caregiver, and was involved in the production of a television series, 'Caregiving with June Callwood,' a 13-part TV/video series that tackled caregiver issues. She produces a Personal Care binder, designed to help caregivers keep track of critical personal and medical information needed when coordinating care for a loved one at home. Karen is also available to give seminars to both family and professional caregivers.

I invite you to visit the sites for the Caregiver Network and How to Care at www.caregiver.on.ca and at www.howtocare.com.

Sources

1. September 1999 Berger Population Health Monitor.

Jaye Waggoner, BAA

A diagnosis of Alzheimer's Disease (AD) can turn the lives of patients, spouses, friends and family members upside down. There can be a real sense of fear in not knowing what the future will hold. What kind of changes will take place? Who will take on the role of caregiver? It is a lot for families to handle.

Fortunately, aside from having the support of their physicians, patients and caregivers have an extended family in the Alzheimer Society of Canada. The Society has numerous programs designed to help patients, families, physicians and paid caregivers enhance the lives of those living with AD.

TriAD is one such program. The "Tri" refers to physicians, patients and caregivers and the AD for Alzheimer's Disease. This educational support program was developed to provide information and resources for physicians and to aid them in making and communicating the diagnosis of AD. Research indicates that sometimes persons with the disease and caregivers are not made aware fast enough of the resources available through their community.

As a part of the program, the TriAD kit is made available to physicians. The kit includes a diagnostic protocol and assessment scales. Patients and caregivers also receive a kit from their doctor at the time of diagnosis, which includes brochures and a video.