Resources for people with dementia

Initial role of the Alzheimer Society

Patients with dementia and their families benefit from accurate and clear information about the diagnosis as early as possible. Although the family physician (or other specialist) initiates discussions about what a dementia diagnosis means and provides practical information about management, the time limitations on most clinic visits mean that additional strategies to support and educate patients and their families are needed. There are many misconceptions about Alzheimer disease and other dementias that can have profound effects on patients’ experiences, particularly soon after diagnosis.^8,9 Although pharmaceutical companies have produced useful patient information packages, the Alzheimer Society should play the main role in this patient education task.

Although some patients are overwhelmed with a new diagnosis, you should consider referral to the Alzheimer Society, or at least mention the role of formal support services, such as those provided by the Alzheimer Society, at the time of diagnosis. Physicians can suggest to patients that they contact the closest society chapter office and, if the service is available, refer them directly via the First Link program.¹⁰ Although there are no studies looking at early involvement with the Alzheimer Society specifically, evidence suggests that early diagnosis and use of formal services can help caregivers adjust to their new role and help establish relationships with service providers.⁸ It is important to stress that the Alzheimer Society can aid patients and families throughout the continuum of the disease, regardless of the type of dementia, and that the services are generally free. The local society chapter can also assist the family physician in identifying and accessing local resources that might be helpful to patients or families.

First Link program

Although referral to the Alzheimer Society is an important part of dementia management, it has been shown that it often does not happen.³ The First Link program was developed by the Alzheimer Society to assist physicians in the referral process and to decrease the need to rely on patients to act on their physicians’ recommendations. The First Link referral process begins when the family physician seeks permission from the patient and family to provide the Alzheimer Society with contact information and sends a simple referral sheet to the local chapter office. The Alzheimer Society proactively contacts the patient or caregiver to introduce the services available and to arrange follow-up contact.

Unfortunately, First Link is not yet available across the country, and there is no central listing of programs as a result of funding variability. However, the Alzheimer Society exists in 150 communities across Canada, and physicians can inquire with their local chapters to clarify the availability of First Link in their areas. To find the office closest to your community, visit the Alzheimer Society of Canada website at www.alzheimer.ca or call 800 616-8816. If First Link is not available, family physicians can still suggest to patients and caregivers that they contact the local chapter to access services.

The local Alzheimer Society office contacts Mr W. and his wife. A staff member, Anne, talks with them about their experiences, exploring their reactions to the diagnosis and the questions the diagnosis has raised for them. Anne describes the services that might be helpful at this stage, such as participating in learning sessions about the disease or some informal groups of other newly diagnosed individuals and their family members. Mr and Mrs W. agree that they will need some help, but admit to feeling quite overwhelmed and report the initial visit to your office to have been quite stressful. Anne provides them with some brochures about things to think about in the early stages of the disease, including legal issues such as power of attorney and estate planning, and suggests that they clarify power of attorney for personal care and finances and that they discuss advance care planning for health issues.

The family remains connected to the staff at the Alzheimer Society. Mrs W. finds the peer support groups to be helpful, even though leaving home to attend them can be distressing. Nine months later, Mrs W., who is also one of your patients, presents to the office reporting distress and sleeplessness because she has to supervise her husband and because she is concerned about leaving him at home alone. After ruling out any important health issues that could be contributing to her symptoms, you reassure her that many caregivers of patients with dementia experience caregiver stress and you make some suggestions to help.

Caregiver stress and patient quality of life

Physicians and the staff at the Alzheimer Society can identify triggers and provide suggestions about responses to minimize stress. The Alzheimer Society offers learning opportunities, peer support, and individual or family support in which the caregiver can learn from others’ experiences and develop strategies to respond to challenging behaviour. The general benefits of meeting with others who face similar challenges can be helpful in diminishing caregiver stress. Understanding the disease and what to expect as it progresses can help family caregivers anticipate the person’s needs and behaviour. Providing strategies for responding to behavioural changes can help family members proactively avoid crises associated with advancing disease (eg, wandering), and this can delay a move to long-term care by as much as 18 months.^11,12 These roles are usually shared between the family physician and the Alzheimer Society, but greater direct collaboration would be helpful in many clinical situations.

Several other practical strategies can be helpful for caregiver stress and to assist patients. Respite options can be important to explore, especially as the severity of the illness progresses. In-home respite care to allow caregivers to attend social activities or do errands can be crucial. These services vary across the country, but usually a personal support worker is available to visit the home for several hours at a subsidized rate to give the caregiver a break.

Many regions also have community-based adult day programs located in community centres, hospitals, nursing homes, or retirement homes. These programs provide physical and social activities for patients, as well as caregiver relief. “Friendly visitor” programs from health care organizations or community groups might also provide in-home respite.

Developing a plan for a period of institutional respite care in a nursing or retirement home, where the patient leaves the home for 1 to 3 weeks, can allow the caregiver to travel for a short period of time. Downsides to this form of respite care are that people with moderate to severe dementia sometimes decompensate in new environments, contributing to caregiver distress. Some caregivers are stressed by the perception or concern that they need to supervise care in the new facility, thus negating the benefit of time away. The Alzheimer Society can support family members in preparing for the transition to a day or respite program, helping them to learn how to move from being sole care providers to being members of a larger care team.

Eventually, Mr W. develops more severe dementia. His wife has continued to attend support groups, going while an in-home respite worker is visiting. One day Mr W. wanders away from home while Mrs W. is doing laundry, and she calls you distraught after a neighbour brings him home.

Safety issues

Although wandering is very difficult to manage, there are several resources that can be helpful. The Alzheimer Society offers a service called Safely Home, initially developed with the Royal Canadian Mounted Police. For a one-time fee of $35, the patient can be registered in a national police database to facilitate identification and safe return home. The fee also covers an identification bracelet, a caregiver handbook for managing wandering, and identification cards.

Technology is evolving rapidly in this area, and global positioning–based strategies are becoming available to allow searchers to identify dementia patients’ locations. Many of these have limitations, and to help patients determine what to look for when considering locating technology, the Alzheimer Society’s information and checklist on locating devices might help patients make decisions (Box 2).

A listing of online resources available to physicians for the nonpharmacologic management of dementia is found in Box 3. Specialized geriatric psychiatry or medicine programs and Community Care Access Centre services can also be resources for collaboration in management.

Mr W. is admitted to a nursing home 4 months later, after several other episodes of wandering and episodes of aggression to the personal support workers. Once there, he participates in the Alzheimer Society–supported arts program, which is noted to improve his mood for a period of time afterward. His wife continues to visit her husband and to collaborate with the staff on her husband’s care. Eight months later he develops pneumonia and, based on his previously stated wishes, clarified while he was still capable, he is treated at the facility but deteriorates and dies with his wife at the bedside. The Alzheimer Society staff members invite Mrs W. to remain in contact with the Alzheimer Society whenever needed.