Article

Medical Management of Frontotemporal Dementias: The Importance of the Caregiver in Symptom Assessment and Guidance of Treatment Strategies

Sanders-Brown Center on Aging, University of Kentucky College of Medicine, Room 223, 800 South Limestone Street, Lexington, KY 40536, USA.
Journal of Molecular Neuroscience (Impact Factor: 2.34). 06/2011; 45(3):713-23. DOI: 10.1007/s12031-011-9558-7
Source: PubMed

ABSTRACT

There are no currently Food and Drug Administration-approved or proven off-label treatments for the frontotemporal dementias (FTD). Clinicians, caregivers, and patients struggle regularly to find therapeutic regimens that can alleviate the problematic behavioral and cognitive symptoms associated with these devastating conditions. Success is "hit or miss" and the lessons learned are largely anecdotal to date. Drug discovery in this area has been largely hampered by the heterogeneous clinical presentations and pathological phenotypes of disease that represent significant obstacles to progress in this area. Biologically, plausible treatment strategies include the use of antidepressants (selective serotonin reuptake inhibitors or serotonin-specific reuptake inhibitor and monoamine oxidase inhibitors), acetylcholinesterase inhibitors, N-methyl-D-aspartic acid antagonists, mood stabilizers, antipsychotics, stimulants, antihypertensives, and agents that may ameliorate the symptoms of parkinsonism, pseudobulbar affect, and motor neuron disease that can often coexist with FTD. These medications all carry potential risks as well as possible benefits for the person suffering from FTD, and a clear understanding of these factors is critical in selecting an appropriate therapeutic regimen to maximize cognition and daily functions, reduce behavioral symptoms, and alleviate caregiver burden in an individual patient. The role of the caregiver in tracking and reporting of symptoms and the effects of individual therapeutic interventions is pivotal in this process. This manuscript highlights the importance of establishing an effective therapeutic partnership between the physician and caregiver in the medical management of the person suffering from FTD.

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    • "Partners describe a lack of listening by specialists, and of opportunity to discuss their changing roles, or voice their own needs. [9] The importance of being the focus of concern, and being " informed, addressed and consulted " by health professionals has been clearly articulated (pp 626), [8] as has the necessity of establishing a strong relationship between Health professionals and primary caregivers in the management of PD. [12] The Alzheimer " s literature [11] has described micro-level interactions (the subtleties of engagement) experienced between partners of people with Alzheimer " s disease and Alzheimer " s health professionals. However, no studies have focused at this level on the engagement between partners and Parkinson " s health professionals. "
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    ABSTRACT: Relevant conflicts of interest/financial disclosures: Nothing to report.
    Full-text · Article · Sep 2015 · Brain Impairment
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    • "Partners describe a lack of listening by specialists, and of opportunity to discuss their changing roles, or voice their own needs. [9] The importance of being the focus of concern, and being " informed, addressed and consulted " by health professionals has been clearly articulated (pp 626), [8] as has the necessity of establishing a strong relationship between Health professionals and primary caregivers in the management of PD. [12] The Alzheimer " s literature [11] has described micro-level interactions (the subtleties of engagement) experienced between partners of people with Alzheimer " s disease and Alzheimer " s health professionals. However, no studies have focused at this level on the engagement between partners and Parkinson " s health professionals. "
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    ABSTRACT: Partners of people with Parkinson's disease (PD) have first-hand knowledge relevant to the management of the person with Parkinson's (PwP). If captured, this knowledge may improve effective care for the PwP. However, there is a lack of research focusing primarily on partners’ experiences of engagement with health professionals working in PD (HPPs). Methods: Interpretative Phenomenological Analysis (IPA) was used to investigate the meaning of partners’ experiences of engagement with HPPs. Semi-structured interviews with 15 partners of PwP provided primary data. Each interview was digitally recorded, transcribed verbatim and analysed for emerging themes. Results: Three themes emerged: (i) partners’ lack of entitlement for their own needs to be met; (ii) submersion of self in the partnership and (iii) health professionals as agents of support. Additionally, sub-themes were identified, such as barriers to feeling entitled, setting up a premise for entitlement, and lost identity. Together, these themes highlight the current lack of focus on the partners of PwP. A process model was developed to describe partners’ cyclic progression through the various stages of their experience, and in the process, identifying initiatives for intervention. Conclusion: Given a lack of focus on the needs of partners of PwP, these preliminary insights could inform the delivery of improved services that support partners. This will ultimately benefit the PwP.
    Full-text · Article · Apr 2015 · Brain Impairment
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    ABSTRACT: Abstract Primary progressive aphasia (PPA) and behavioural-variant frontotemporal dementia (bvFTD) are clinical syndromes under the umbrella term 'frontotemporal dementia' (FTD) and are caused by a neurodegenerative disease with an onset most typically in the productive years of adulthood. The cognitive and behavioural impairments associated with FTD interfere with successful engagement in typical life roles, such as parenting, working, and maintenance of interpersonal relationships. There are currently no treatments to stop or slow the degenerative process and there are only very limited medication options for the management of the cognitive-behavioural symptoms. However, alternative, non-pharmacological interventions may offer significant benefit to the quality of life of the diagnosed individual. The goal of this paper is to provide an overview of the approaches available through neurorehabilitation and community-based services that facilitate successful engagement in life activities and promote optimal quality of life for the individuals and families living with FTD. It is hoped that as medical providers become more familiar with behavioural interventions, referrals for services will increase thereby allowing individuals with FTD and their caregivers to learn ways to adapt, adjust, and participate in life to the fullest despite the impairments from this progressive disease.
    No preview · Article · Apr 2013 · International Review of Psychiatry
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