From Partnerships to Pathways in Dementia Care

From coast to coast, the services available and the services delivered for persons with dementia and their families are as diverse and innovative as the needs identified and the communities in which they were established. However, despite the best intentions, no one service provider can meet the complex and ever changing needs of both the person with dementia and their respective partners in care. As a result, those for whom services were established are at risk of becoming casualties of the fragmented system.

While advocacy for enhanced resources to meet client needs is noble, we must ask on behalf of those diagnosed with dementia and their family members: “How can the current services provided become more integrated and co-ordinated within our communities?”

Responsive services require meeting the needs of both the person with Alzheimer Disease and the caregiver. The Alzheimer Society of Metropolitan Toronto has developed a needs based planning chart that demonstrates this care planning challenge. This graphic explores the varying priority needs of the caregiver as well as the needs of the person with Alzheimer Disease throughout the continuum.

All would agree that care planning is complex, and that needs are continually changing throughout the continuum of early, middle and late stages of the disease. The priority needs of a caregiver and the priority needs of the person diagnosed can and do fluctuate in intensity at different times throughout the continuum. For example, a caregiver may value respite care as a low priority in the early stages, but prioritize it as an intensive need throughout the middle and late stages of the disease. While respite care may never be a priority need for the person with Alzheimer Disease, activation services and opportunities for meaningful engagement may parallel the caregiver's need for respite.

Individually, delivery agents may provide accessible, effective and responsive services to meet an expressed need. However, just as one interlocking brick does not make a pathway, one service that loses focus of the family as a whole risks tipping the scales to the point where helping one person increases burden for the other. For example, recommending increased day programming -while clearly of benefit to the person diagnosed -may cause a financial barrier to the caregiver.

Fragmentation occurs, and the intended support system becomes a dead end rather than a pathway. This dead end imposes guilt and increased stress on the caregiver as clients valiantly negotiate their journey through the community services and health care system labyrinths intended to support them.

Caregivers are the first to express that delivery agents at the front lines are dedicated and committed to helping, but report that the system in which they work is fragmented and frustrating to them as caregivers.

Dr Barry Reisburg’s Global Deterioration Scale is a hallmark staging system that provides guideposts for the clinical characteristics of the progression and degeneration caused by Alzheimer Disease. Each service established in dementia care must address either the need of a person diagnosed, or of a partner in care at one of these guideposts.

Stages:

1. No memory deficit in evidence.
2. Subjective complaints of memory deficits.
3. Word and name finding deficits, forgetfulness, concentration affected.
4. Decreased ability to recall recent events, to orient and to perform complex tasks.
5. Assistance with instrumental activities of daily living required.
6. Assistance with activities of daily living required and personality changes.
7. The brain is no longer able to tell the body how to function.

The first guidepost of the disease, where no subjective complaints are recorded, is the time to educate the general public about the signs and symptoms of the disease and of caregiver stress. Members of the community must be informed about the implications of the disease on the person and on the caregiver, and know how to get help for a friend or loved one showing signs and symptoms. Knowledgeable professionals in education and media can be effective champions of this cause.

The second guidepost: the person experiences subjective difficulties in employment or social situations; word-finding problems are present, and retrieving once-familiar information becomes increasingly taxing. The person's needs include access to services that will assess normal forgetfulness, and investigate other causes for the presenting symptoms. While the person has a growing awareness that something is wrong, both the family and the person affected try to decide how seriously they should take these memory lapses, functional impairments or periods of confusion.

Access to memory aids or strategies to compensate for memory retrieval difficulties are required. A process to assist people in determining the number of warning signs present and to explore options to address any treatable conditions is essential. Clearly marked, consistent community pathways need to be developed by champions within the system in order for people to become confident about communicating their concerns to their physician.

For each delivery agent whose mandate meets a need:

• At which guidepost is the need being met?
• Which other delivery agents in the community address these needs?
• If there are gaps, what process will I as champion take to establish partnerships to fill this need and to develop a supportive dementia care community pathway?

The third guidepost is a time when the person's concentration is affected, and word and name-finding deficits are evident to others. This is often described as the time when impairments accumulate to the point of crisis, making it imperative for the person to address the situation.

The responsive pathway must ensure access to a standardized, accurate and competent diagnosis. Clients report all too frequently that the standard elements used to determine the diagnosis were not incorporated in their assessment. When a diagnosis is communicated, it should include supports for the person and the family through the prognosis, current treatment and research options, and through the legal and financial issues that can be confusing and emotionally distressing. If a responsive diagnostic pathway is to be established, champions are needed in medical schools, among general practitioners, diagnostic clinics, counselors, and within the research and legal communities.

The fourth guidepost begins when the person diagnosed experiences decreased ability to recall recent events, to orient to place and time and to perform complex tasks. This understandably may lead to frustration, denial or withdrawal. The disease causes the once independent person to seek help with tasks that require executive function.

Effective communication strategies and task breakdown techniques exist, and are effective to reassure a person who is disorientated or requires assistance with the mechanics of activities of daily living. Supportive pathways include titrating the provision of care to meet the current progression of the disease, and simplifying the environment in ways that preserve autonomy and self-esteem. Rather than developing highly effective supportive pathways, resources are too often focused on the problems, addressing confusion, anxiety, suspiciousness or aggression - all very natural reactions to situations that can no longer be interpreted by the person.

Caregivers take on more and more roles- sometimes learning for the first time to handle finances- and to juggle transportation, maintenance or housekeeping duties. Once again, collaborative pathways would be more balanced if, when helping caregivers to develop skills to assume these added roles, supports were put in place. These would help to coach caregivers to identify and respond to their coping styles, their strengths and their thresholds as they experience ever-increasing responsibilities in the caregiving role.

Supportive pathways at this guidepost include meeting the needs for crisis intervention pre-plans, particularly when one person is the sole source of support. Safety in the home and on the roadways- including wandering- is essential and an inevitable part of everyone’s journey in providing dementia care. Complex issues of capacity, consent to treatment and financial planning can become barriers to all affected, particularly for those who are diagnosed under age 65 and for those who live alone. For example, clients often report receiving different information while running between lawyers, doctors and banking institutions in an attempt to secure even basic powers of attorney.

A meeting of the minds at this role change guidepost requires champions in the legal and financial fields, occupational therapy, activation, transportation, education and mental health systems if a pathway is to be integrated to meet these very complex, yet intertwined, needs.

The fifth guidepost is defined when the person requires assistance with instrumental activities of daily living, and the caregiver makes a choice to become or not to become a career caregiver. For those who undertake this task, understanding that symptoms are an expression of unmet needs and learning therapeutic approaches to their management requires access to on-going assessment and coinciding skills development. Balancing the autonomy and safety implications for the person is necessary. Linking partners with expertise in assessment, on assistive devices, and meaningful activities will provide client responsive pathways considerate of the interests and the current abilities of the clients being supported.

People who choose to make a career of caregiving can become subject to stress, grief, burnout and depression. Champions with expertise in implementing coping strategies must be linked with partners providing activation and respite services to provide opportunities for effectively re-charging energy levels. Career caregivers require responsive pathways if they are to be supported, and if they are to enjoy some peace of mind while maintaining their desired caregiving role.

At the sixth guidepost, the person will require assistance with the mechanics of activities of daily living. Basic dressing, bathing, toileting and eating can become times of increased anxiety, delusions, obsessions and agitation. Increased disturbances of sleep and appetite are often coupled with accelerated problems in communicating. This is a time that requires increased supports and consideration of transitional care choices.

Exploring alternative care options is, from an emotional perspective, the most difficult decision to make. It requires facing the progression of the disease, and it requires trusting strangers to take over the personalized care of the person affected while at their most vulnerable. Added to the emotional burden is the very practical burden of having to prepare financial re-plans that accommodate transitional care costs.

Respecting a caregiver’s choice to continue caring at home means providing supports that include training on home adaptations, proper lifting and transfer techniques. Respecting the caregiver’s choice to use transitional care means providing supports that co-ordinate the admission process. Accumulated biographical knowledge of the person must be transferred to the new extended care team and must include the client's habits, preferences and coping styles. At the same time, the caregiver may require strategies for successful re-socialization outside of the primary caregiving role, while learning new skills on how to communicate and partner with a new extended care team.

Quality of life is provided "in the moment" at the seventh guidepost, with primary considerations being the comfort and dignity of the person and validation of caregiver emotions. Partners in care include occupational and physiotherapists to assist with mobility and comfort, and expertise from recreation professionals to provide opportunities for meaningful engagement that is responsive to the senses.

Partners providing spiritual guidance, hospice, palliative and bereavement services can assist caregivers to understand the dying process, and the treatment options for pain and discomfort that respect the personal values and expressed wishes of the person for whom decisions are being made.

If delivery agents are to become responsive, then support cannot end when rigid eligibility requirements are no longer met. No one agency or service provider can hope to meet the ever-evolving and complex needs of the person with Alzheimer Disease and their respective caregivers. By using Reisberg's staging process, the progression of the disease can be defined into a clear framework of needs.

Reisberg's guideposts will assist service providers to identify their current ability to respond to needs at any time during the disease process. The challenge is to then step back with a more global vision of the comprehensive needs of both the caregiver and the person with dementia, and from this vantage point, explore opportunities for collaboration. While champions throughout the continuum have diverse areas of expertise, making a positive difference for those affected by dementia becomes the common interface.

Gaps and fragmentation are a constant challenge. However, partnerships while they require a change in thinking, can overcome these barriers and can not only maximize existing resources, but shape the future to result in responsive and integrated dementia care pathways for those affected throughout our respective communities.