Physical activity is one approach that may help manage the symptoms experienced by personswith MS and the burden faced by their care-partners. This thesis examined: i) the efficacy of aphysical activity intervention for increasing physical activity in dyads affected by moderate-to-severe MS; and (ii) the interdependence in physical activity in MS-care-partner dyads. A 12-week, randomized pilot feasibility trial was conducted in five (two intervention; three control)MS-care-partner dyads. Participants self-reported physical activity and wore an accelerometerfor 7-days at baseline and 12-weeks (i.e., follow-up). A large effect of the intervention wasobserved on self-reported physical activity (d= 0.98) and time spent sedentary (d= -1.26). Mostcorrelations in physical activity within dyads were moderate-to-strong at baseline (rs range=0.33-0.72) and over time (rs range= 0.40-0.80). The results from this pilot case study lay thefoundation for larger physical activity interventions in dyads affected by MS

Advance Care Planning has been advocated for over 20 years as a way in which individuals who are no longer able to speak for themselves, may still convey their preferences regarding a wide of array of decisions, including medical care. Advance care planning may not be initiated by individuals for many reasons, and even when initiated, may not be specific enough to help guide decision making. Recent advance care planning models have utilized disease specific information to help guide end of life health care decision-making. Persons diagnosed with mild cognitive impairment face an increased possibility of developing dementia at some point in the future, but may retain decision making capability for a window of time, and thus the opportunity to participate in advance care planning. The advance care planning experiences of individuals with mild cognitive impairment have not been extensively studied. This study explored the advance care planning experiences of persons with mild cognitive impairment and their care partners' understanding and views of advance care planning, and if the diagnosis of mild cognitive impairment affects the advance care planning practices of these two groups. A convenience sample of 10 individuals with mild cognitive impairment and their 10 care partners (n=20) were recruited and interviewed. Using a grounded theory qualitative analysis approach, four themes were identified (1) decreased awareness regarding advance care planning from individuals with mild cognitive impairment versus a heightened awareness for the care partners; 2) the preference for comfort care measures only; 3) preferences for future end of life healthcare decisions largely influenced by previous end of life experiences with family and friends; and 4) lack of discussion of end of life healthcare decisions related to dementia and/or artificial nutrition and hydration by physicians or other healthcare providers. In addition two latent themes emerged including from the care partners, the importance of the mild cognitive impairment support group and lawyers for advance care planning and from both care partners and the mild cognitive impairment participants, trying to maintain autonomy, to `hang on' to self were identified. Study implications include the need for structured advance care planning interventions with individuals diagnosed with mild cognitive impairment to focus on common end of life scenarios, such as whether to use artificial nutrition and hydration, which will require future surrogate decision making.

Le deuil blanc est peu connu des professionnels de la santé, pourtant cette expérience peut affecter toutes personnes proches aidantes d’une personne vivant avec un trouble neurocognitif. Il consiste en une réponse émotionnelle et physique pouvant survenir lorsque des pertes sont constatées chez la personne vivant avec un trouble cognitif. Les connaissances sur les significations du deuil blanc sont limitées et insuffisantes pour le développement d’interventions efficaces. Le but de l’étude était de comprendre les significations de l’expérience du deuil blanc vécue par des personnes proches aidantes de personnes vivant avec un trouble cognitif et vivant en centre d’hébergement. Dans le cadre d’une phénoménologie descriptive, six personnes proches aidantes ont participé à une entrevue individuelle et celles-ci ont été analysées par la méthode de Giorgi. Les résultats décrivent que les personnes proches aidantes vivent des changements relationnels et des sentiments pénibles provoqués par les changements cognitifs qui progressent. Ceci les amène à ressentir des sentiments ambivalents concernant l’hébergement du proche et demande aux personnes proches aidantes de prendre soin d’eux-mêmes pour poursuivre leur implication. Ces résultats permettront de faciliter la compréhension des professionnels en centre d’hébergement sur le phénomène et d’améliorer la reconnaissance du deuil blanc pour mieux soutenir les personnes proches aidantes. Aussi, les résultats pourront soutenir d’autres études pour identifier des éléments conduisant à des interventions adaptées pour les personnes proches aidantes. / Pre-death grief is not well known to health professionals, yet this experience can affect all care partners of people living with a neurocognitive disorder. It is an emotional and physical response related to the losses observed in the affected person. Knowledge about the meanings of pre-death grief is limited and insufficient for the development of effective interventions. The purpose of this study was to understand the meanings of the pre-death grief experienced by care partners of a cognitively impaired person living in a long-term care home. Using a descriptive phenomenology, six care partners participated in an individual interview, and these were analyzed using Giorgi's method. The results describe that the care partners experience relational changes and distressing feelings caused by the advancing cognitive changes. This leads to ambivalent feelings regarding their relative living in a long-term care home and requires care partners to take care of themselves to continue their involvement. These results will facilitate the understanding of long-term care home professionals' regarding this phenomenon and improve recognition of pre-death grief to better support care partners. Also, the results may support other studies to identify elements leading to adapted interventions for care partners.