Universidade de Aveiro 2021

Ana Paula Palongan de Oliveira

Dando voz a pessoas com demência e seus cuidadores sobre um programa de atividade física domiciliar: um estudo qualitativo Giving voice to people with the dementia and their carers about a home-based physical activity programme: a qualitative study

Universidade de Aveiro 2021

Ana Paula Palongan de Oliveira

Dando voz a pessoas com demência e seus cuidadores sobre um programa de atividade física domiciliar: um estudo qualitativo Giving voice to people with the dementia and their carers about a home-based physical activity programme: a qualitative study

Dissertação apresentada à Universidade de Aveiro para cumprimento dos requisitos necessários à obtenção do grau de Mestre em Gerontologia Aplicada, realizada sob a orientação científica da Professora Doutora Alda Sofia Pires de Dias Marques, Professora Coordenadora da Escola Superior de Saúde da Universidade de Aveiro.

Dedico esta dissertação aos meus pais, Edna e Benedito, a ̀minha avó, Isorema, e ao meu marido Marcos, pelo total apoio e incentivo em minhas escolhas, e pelo carinho e compreensão demonstrados desde sempre.

o júri

presidente Professora Doutora Liliana Xavier Marques de Sousa

Professora Associada c/ Agregação, Universidade de Aveiro

Arguente Professora Doutora Maria Cristina Damas Argel de Melo,

Professora Coordenadora, Instituto Politécnico do Porto - Escola Superior de Tecnologia da Saúde do Porto

Orientadora Professora Doutora Alda Sofia Pires de Dias Marques,

Professora Coordenadora s/ Agregação, Universidade de Aveiro

agradecimentos

Dedico um profundo agradecimento à minha orientadora, Professora Doutora Alda Marques, por aceitar, conduzir, incentivar e apoiar o presente trabalho. À Sara Almeida, pela total dedicação, apoio científico e emocional, desde o início deste estudo. Aos participantes e seus familiares, pelo voto de confiança na partilha de testemunhos, permitindo que este trabalho fosse possível. Aos meus pais, Edna e Benedito, que sempre estiveram ao meu lado me apoiando ao longo de toda a minha trajetória. Ao meu marido Marcos pela compreensão e paciência demonstrada durante o período do projeto. À minha querida amiga, Marli, pela motivação e apoio incondicional. O meu mais sincero, obrigado.

palavras-chave

Motivadores, barreiras, impactos, exercício, cuidador informal, abordagem centrada na pessoa.

resumo

Introdução: A promoção de programas domiciliários de atividade física parece ser uma oportunidade de oferecer uma intervenção personalizada para manter a independência das pessoas com demência (PcD) por mais tempo. Embora resultados promissores destas intervenções na saúde física das PcD sejam conhecidos, a adesão à atividade física tem constituído um desafio e as opiniões das PcD e dos seus cuidadores informais são frequentemente negligenciadas. Ouvir as PcD e seus cuidadores é fundamental para identificar motivadores/facilitadores e barreiras à atividade física. O objetivo deste estudo foi explorar os motivadores/facilitadores, barreiras e impactos percebidos da participação num programa domiciliário de atividade física para PcD (LiFE4D) na perspetiva da PcD e seus cuidadores informais. Método: Foram conduzidas entrevistas curtas semiestruturadas com 15 pessoas com demência (n=9; 60% mulheres, 82 [75-84] anos, Addenbrooke´s Cognitive Examination III pontuação total 50,4 [22-72] pontos) e 9 cuidadores (n= 7; 77,8% mulheres, 72 [60-76] anos, 3 [2-4,5] anos a prestar cuidados). Realizou-se uma análise temática dedutiva com recurso ao software Web Qualitative Data Analysis. Resultados: Foram identificados 44 subtemas. Os subtemas foram divididos em 4 temas: barreiras, motivadores/facilitadores, impacto do programa e outros. As PcD identificaram 25 subtemas e os cuidadores identificaram 19 subtemas. Os participantes percecionaram mais motivadores/facilitadores do que barreiras para participar no LiFE4D; os subtemas reportados em comum foram exercícios fáceis e suporte profissional nos motivadores/facilitadores; e cansaço e falta de tempo nas barreiras. Apenas foram percecionados impactos positivos da participação no LiFE4D pelas PcD e seus cuidadores. Conclusão: Os participantes percecionaram mais motivadores/facilitadores do que barreiras para participar no LiFE4D. A abordagem individualizada centrada na pessoa e o envolvimento dos cuidadores facilitaram a adesão ao programa. Dificuldades como cansaço, problemas de saúde física e falta de tempo foram apontadas como principais barreiras. Embora existam alguns subtemas em comum, havia barreiras, motivadores/facilitadores e impactos que diferiam entre PcD e seus cuidadores. Tais diferenças devem ser exploradas a fim de melhorar as intervenções de atividade física direcionadas a esse público.

keywords

Motivators, barriers, impacts, exercise, informal carer, person-centered approach.

abstract

Introduction: The promotion of home-based physical activity programmes seems to be an opportunity to offer a personalised intervention to maintain the independence of people with dementia (PwD) for longer. Although promising results of these interventions in the physical health of PwD are known, adherence to physical activity has been a challenge and the opinions of PwD and their informal carers are often overlooked. Listening to PwD and their carers is essential to identify barriers, motivators/facilitators, to physical activity. The aim of this study was to explore the perceived barriers, motivators/facilitators and impacts of participation in a home-based physical activity programme for PwD (LiFE4D) from the perspective of PwD and their informal carers. Methods: Short semi-structured interviews were conducted with 15 people with dementia (n=9; 60% women, 82 [75-84] years old, Addenbrooke´s Cognitive Examination - III total score 50.4 [22-72] points) and 9 carers (n=7, 77.8 % women, 72 [60-76] years, 3 [2-4.5] years providing care). Deductive thematic analysis was performed using the Web Qualitative Data Analysis software. Results: 44 subthemes were identified. The sub-themes were divided into 4 themes: barriers, motivators/facilitators, impacts of the programme and other subthemes. PwD identified 25 subthemes and carers identified 19 subthemes. Participants perceived more motivators/facilitators than barriers to participate in LiFE4D; the subthemes reported in common were easy exercises and professional support from motivators/facilitators; and tiredness and lack of time at the barriers. Only positive impacts of participation in LiFE4D were perceived by PwD and their carers. Conclusions: Participants perceived more motivators/facilitators than barriers of participating in LiFE4D. The individualised person-centred approach, and the carers involvement facilitated adherence to the programme. Difficulties such as tiredness, physical health problems and lack of time were seen as main barriers. Although there are some subthemes in common, there were barriers, motivators/facilitators barriers and impacts that differed between PwD and their carers. Such differences must be explored in order to improve physical activity interventions directed at this audience.

Abbreviations and/or acronyms

ACE-III - Addenbrooke´s Cognitive Examination III

ADL - Activities of daily living

LIFE - Lifestyle Integrated Functional Exercise

LiFE4D - Lifestyle Integrated Functional Exercise for People with Dementia

PwD - People with dementia

PcD – Pessoa com demência

WebQDA- Web Qualitative Data Analysis

Table of Contents

1. Introduction .................................................................................................................... 1

2. Methods .......................................................................................................................... 4

2.1. Design and ethics ............................................................................................................ 4

2.2. Recruitment of participants ............................................................................................ 4

2.3. Data collection ................................................................................................................ 5

2.4. Intervention ..................................................................................................................... 6

2.5. Data analysis ................................................................................................................... 8

3. Results .......................................................................................................................... 10

3.1. Participants ................................................................................................................... 10

3.2. Thematic analysis ......................................................................................................... 11

3.2.1. Perspective of people with dementia .......................................................................... 11

3.2.1.1. Barriers ........................................................................................................................ 12

3.2.1.2. Motivators/facilitators ................................................................................................. 12

3.2.1.3. Impacts of the programme ........................................................................................... 14

3.2.1.4. Other subthemes .......................................................................................................... 14

3.2.2. Perspective of carers ................................................................................................... 14

3.2.2.1. Barriers ........................................................................................................................ 14

3.2.2.2. Motivators/facilitators ................................................................................................. 15

3.2.2.3. Impacts of the programme ........................................................................................... 16

3.2.2.4. Other subthemes .......................................................................................................... 17

3.3. Contextual notes ........................................................................................................... 20

4. Discussion ..................................................................................................................... 21

5. Conclusion .................................................................................................................... 26 References.................................................................................................................................27

Annexes and Appendices

Annex I - Ethics approval.……………………………………………………………………33

Appendix I - Participants information sheet.…………………………………………………34

Appendix II - Interview guide carer.………….………………………………………………35

Appendix III - Interview guide people of dementia…………………………………………..36

List of Tables

Table 1 - Semi-structured interview guides for the people with dementia and their carers.06

Table 2 - LiFE4D design (per week) …………………………….………………………..07

Table 3 - Characteristics of participants…………………………………………………...10

Table 4 - Information on the context of care provided by the carers…………………...…11

Table 5 - Barriers, motivators/facilitators and impacts of the programme for participation in LiFE4D according to PwD…..………………………………………………………….17

Table 6 - Barriers, motivators/facilitators, and impacts of participating in LiFE4D according to carers perspective……………………………………………………………19

1

1. Introduction

Dementia is defined as a chronic or progressive syndrome, that impairs cognitive

function and declines the ability to perform activities of daily living (ADL) (Prince,

Albanese, Guerchet, & Prina, 2014). Worldwide, this syndrome is a major cause of

disability and dependence among older people (American Psychiatric Association, 2014;

DGS, 2016; World Health Organization, 2017). Dementia is currently considered a public

health priority with a substantial burden on health, social and economic systems (World

Health Organization, 2017). It is estimated that around 50 million people lives with

dementia worldwide, and around 205000 in Portugal (OCDE, 2017; World Health

Organization, 2017). Therefore, the growing number of people living with dementia

poses enormous personal, social and economic challenges to meet care demands and

costs (van der Wardt et al., 2019). Most people with dementia (PwD) live at home

(Alzheimer’s Disease International, 2018; Harrison et al., 2019), and despite all

challenges, it is their wish to continue to live in their homes for as long as possible, which

is also the recommendation of the World Health Organization and of several European

countries (OCDE, 2017; World Health Organization, 2012).

Physical activity is fundamental to maintain PwD living at home, since this non-

pharmacological intervention improves the performance of ADL, mobility and mood,

delays the decline in cognitive function, (Forbes, Forbes, Blake, Thiessen, & Forbes,

2015; Hernández et al., 2015; Souto Barreto, Demougeot, Pillard, Lapeyre-Mestre, &

Rolland, 2015) reduces the risk of falls and the rate of mortality, hospitalisations and

institutionalisations (Hancox et al., 2019; Pitkäl̈a et al., 2013). Physical activity is

therefore essential for maintaining the independence of PwD (Stubbs et al., 2014; World

Health Organization, 2010, 2012). However, PwD present low levels of physical activity,

spending around 66% of their day in low intense activity levels or in sedentary behaviour

(van Alphen, Hortobágyi, & van Heuvelen, 2016). Thus, there is an urgent need for

physical activity interventions aimed at preventing functional deterioration and

dependence to help PwD live well and longer in their homes (van der Wardt et al., 2019).

Physical activity have become an attractive option, given its simplicity, potential

positive benefits on physical health and effective costs (Cerga-Pashoja et al., 2015; Maki,

Sakurai, Okochi, Yamaguchi, & Toba, 2018; Prince et al., 2014). Actually, some physical

activity programmes have been available in community centres or institutions (Forbes et

2

al., 2015). However, high dropout rates and low adherence has been reported by several

studies (Nyman, Adamczewska, & Howlett, 2017; van der Wardt et al., 2017, 2019). This

can be explained because the majority of physical activity programmes for PwD were

carried out in institutions, at strict times and with structured physical exercises that hardly

fit into the daily routines of this population, in addition to the need for transportation and

one person (e.g., carer) to accompany them during the programme (Opdenacker, Boen,

Coorevits, & Delecluse, 2008). The support of the carer and/or significant person is an

important factor in promoting healthy behaviours (Nyman et al., 2017). This social

support from carer and/or significant person has been associated with improvements on

physical activity levels among community-dwelling older people (Böhm, Mielke, Da

Cruz, Viana Ramires, & Wehrmeister, 2016), which contributes to lower dropout rates

that are not uncommon in programmes for this audience. Recent studies (Nyman et al.,

2017; van Alphen et al., 2016; van der Wardt et al., 2017, 2019) identified barriers (e.g.,

memory problems, health problems, feelings of disability, tiredness) and

motivators/facilitators (e.g., physical benefits, staying active, maintain physical and

mental health, programme tailored to individual needs) for the involvement of PwD in

physical activity. Including physical activity in daily life routine, and personalise

interventions according each person capacity and interests are factors that motivate

adherence to physical activity in PwD (van der Wardt et al., 2019). The promotion of

home-based physical activity programmes seems to be an opportunity to offer a

personalised intervention to maintain the independence and delay the need for

institutionalisation of this population (Stubbs et al., 2014; World Health Organization,

2010, 2012). Physical activity programmes at home have been shown to increase physical

capacity, functionality, flexibility (Steinberg, Leoutsakos, Podewils, & Bayview, 2009;

Teri et al., 2003), aerobic endurance, muscle strength and balance (Vreugdenhil, Cannell,

Davies, & Razay, 2012a). In addition to physical improvements, physical activity at

home seems safe and effective to slow the decline in cognitive, function, as well as

helping to improve behavioural and psychological symptoms of dementia (S. I. L. de

Almeida, Gomes da Silva, & Marques, 2019; de Souto Barreto, Demougeot, Pillard,

Lapeyre-Mestre, & Rolland, 2015).

The Lifestyle Integrated Functional Exercise (LIFE), is a home-based physical

activity programme for older people that incorporates lower limb strength and balance

3

training into daily routines (Clemson et al., 2012). LIFE has shown to reduce disability

and prevent falls in older people with low dropout rates and high adherence (Clemson et

al., 2012). After showing these promising results by incorporating physical activity into

the daily routine several times a day, LIFE was adapted for PwD, the Lifestyle Integrated

Functional Exercise for People with Dementia (LiFE4D) (S. Almeida, Marques, & Silva,

2019). The LiFE4D is an individualised programme, with a 3-month duration and a face-

to-face progressive decrease contact with the health professional, that focus on exercise

capacity, flexibility and upper limb functionality (in addition to balance and lower limb

strength from the original LiFE) (S. Almeida, Gomes Da Silva, & Marques, 2020;

Clemson et al., 2012). It also includes an educational and psychosocial component, and

the involvement of carers and/or significant person (whenever possible) (S. Almeida et

al., 2020).

Although promising results on the physical health of PwD are known, their

opinions and the opinion of those caring for them are often neglected in research because

of perceived difficulties in consent, capacity of answer and difficulties on communication

(Brooks, Savitch, & Gridley, 2017). Involving people in research that is about them has

become an important principle in health research, it is their opinions that will make

interventions better and make them more person-centred (Brooks et al., 2017; Kontos et

al., 2018). By not including the voices of PwD, we may lack understanding and,

therefore, fail to deliver adequate care (Cohen, 1991). It is important to listen PwD and

their carers to identify methods that motivate and support them in their decision to

become more physically active (van Alphen et al., 2016). Thus, qualitative studies that

give voice to PwD are important to contribute to advances in this area. Thus, the aim of

this study was to explore the perceived barriers, motivators/facilitators and impacts of

participating in the LiFE4D programme according to the perspectives of PwD and their

informal carers.

4

2. Methods

2.1. Design and ethics

An exploratory, qualitative study was conducted. The qualitative approach was

chosen because data was collected from reality in a textual format, with meanings marked

by the subjective expression of participants (i.e., seeks to understand the reality lived by

individuals through their perceptions) (Creswell, 2007). Phenomenology with a deductive

approach was used as a theoretical framework for data collection and analysis (Creswell,

2007). This work follows the standards for reporting qualitative research (Alzheimer’s

Disease International, 2018) and the consolidated criteria for reporting qualitative research

(Alzheimer’s Disease International, 2018).

Ethical approval was originally obtained to the LiFE4D programme by the Ethics

Committee of the Health Sciences Research Unit – Coimbra Nursing School, and an

amendment was approved (n ° AD-P437-06 / 2017) for this additional study (annex I). The

confidentiality and anonymity of all data collected was ensured. It was explained to

participants that data would be kept in databases, password protected, with their names

coded and, that all personal identification (e.g., names) that could arise on interviews

would also be coded to ensure anonymity. It was also clarified that their participation was

voluntary and that they were free to withdraw or not answer questions at any time during

the interview. Written informed consent was obtained from all participants or legal

representatives (when applicable).

2.2. Recruitment of participants

A convenience sample was recruited from the LiFE4D study (PwD and their

informal carers/significant people [family member or friend], from now on referred to as

carers). The study sample was characterised as convenience, as it was made up of easily

accessible individuals who meet precise inclusion criteria (Fortin, 2006a). Inclusion criteria

were to have completed the participation in the LiFE4D programme and voluntary

accepted to participate. Exclusion criteria was being unable to respond to the interview

(e.g., aphasia). Potential participants were first contacted by the researcher who usually

contacted them during the LiFE4D programme, to explain the study. A meeting was

scheduled with participants who agreed to participate in this study, to further explain the

study, their voluntary participation and right to withdraw or not answer questions at any

5

time. All interviews were conducted at participants' homes by a researcher not involved in

the LiFE4D intervention, who had no previous contact with the participants. The

interviews were conducted between March and November 2019.

2.3. Data collection

Sociodemographic (e.g., PwD and carer: age and gender; carer: relationship with

the PwD and if living or not together), context of care (hours of basic/instrumental care,

number of people involved in care, and length of care) and clinical (e.g., PwD: number of

comorbidities) data were collected to characterise the sample with a structured

questionnaire. For the purpose of this study, basic care was defined as need of assistance

to feed, dress, bath and walk; and instrumental care was defined as need of assistance to

cook, clean, use transportation, do the laundry and manage finances (Katz, 1983).

The Addenbrooke´s Cognitive Examination III (ACE-III) was used to characterise

the cognitive function of the participants with dementia as it is a sensitive measure of the

early stages of dementia and has been showing high diagnostic accuracy compared to other

widely used cognitive measures (Matiás-Guiu et al., 2017). ACE-III distinguishes five

cognitive domains with a total score of 100 points (e.g., attention: 18 points, memory: 26

points, fluency: 14 points, language: 26 points, and visuospatial processing: 16 points),

with higher values indicating better cognitive performance (Noone, 2015). Cutoff points

were established to differentiate people without cognitive impairment and / or mild

cognitive impairment (82 points) and to discriminate people with dementia (74 points)

(Hsieh, Schubert, Hoon, Mioshi, & Hodges, 2013; Peixoto et al., 2018). ACE-III has been

shown to be a reliable measure (αCronbach=0.91), and a 74 points cut-off has been

established to screen PwD, validated to the Portuguese population (Peixoto et al., 2018).

Qualitative data were obtained with short semi-structured interviews to allow the

exploration and understanding of participants' experiences, opinions, feelings and

attitudes regarding factors that influence their participation in LiFE4D (Virginia Braun &

Victoria Clarke, 2006). This method is appropriate for exploring areas of interest for

people with poor collaboration skills rather than using closed/non-flexible questions

(Digby, Lee, & Williams, 2016). The researcher talked through the script of the interview

and re-worded, re-ordered or clarified any questions if needed. Participants and their

6

carers were encouraged to participate in the interview individually but the options of

being interviewed together or individually were offered.

The interviews were conducted with the help of 2 small portable audio recorders

(Olympus digital voice recorder ws 750m; Olympus VN3100PC digital voice recorder).

At the end of each interview, the researcher made notes about the interview that could be

useful for the interpretation of the data (e.g., environment and participants’ mood), as

recommended in qualitative research with people with poor collaboration skills (Braun &

Clarke, 2006; Hancox et al., 2019; Perfect et al., 2019). Two short semi-structured

interview guides were developed, one for PwD and another one for their carers’, based on

studies in PwD and cognitive decline (Fortin, 2006c, 2006b, 2006a; van Alphen et al.,

2016) (Table1).

Table 1. Semi-structured interview guides for the PwD and their carers´.

People with dementia Carers

1. What are your thoughts about the programme? 2. In your opinion, what were the barriers/difficulties of participating in the programme? 3. In your opinion, what were the facilitators/aspects that helped your participation? 4. Are you still doing the activities??

4.1 If yes, what motivates you to continue? 4.2 If no, why did you stop doing it?

5. What were the impacts or effects of the programme on you?

6. What were the impacts or effects of the programme on the person who is closest to you?

7. What would you change about the programme?

1. What are your thoughts about the programme? 2. In your opinion, what were the barriers/difficulties of participating in the programme? 3. In your opinion, what were the facilitators/aspects that helped your participation? 4. Does he/she continue to do physical activity alone/with help?

4.1 If yes, what motivates him/her to continue?

4.2 If not, why did he/she stop doing it? 5. What were the impacts or effects of the programme on you? 6. What were the impacts or effects of the programme on the person you care for?

7. What would you change about the programme?

2.4. Intervention

LiFE4D is an individualised home-based physical activity programme for PwD and

with the support/supervision of their carers, with the aim of involving PwD in physical

activities several times during the day, to further maintain/increase (or delay the decline of)

their independence in ADL (S. Almeida et al., 2020). LiFE4D was inspired by LiFE, a

home-based physical activity programme, which has shown positive results in adherence,

motivation and self-perception of health (e.g., decreased time in sedentary activity and the

number of falls) maintaining the independence of the older people in ADL (Clemson et al.,

2012). LiFE format encourages the establishment of new positive behaviours by

7

stimulating physical activity at home (S. Almeida et al., 2020; Clemson et al., 2012).

However, it does not include important health-related components of physical fitness (e.g.,

exercise capacity, muscle strength for the entire body and flexibility), carers support, its

design promotes the autonomy of the health professional, gradually decreasing their

presence throughout the programme and has never been explored in PwD (S. Almeida et

al., 2020). It also includes an educational and psychosocial component and encourages the

involvement of carers (i.e. across talks, flyers and practical issues related to the evolution

of the disease, impacts on the participant and their family and/or carers) to help them to

better manage the impacts of dementia (S. Almeida et al., 2020).

Therefore, LiFE4D was designed and implemented. LiFE4D programme lasted 12

weeks (Table 2) with face-to-face sessions (with progressive decrease in face-to-face

contact over time with the health professional, increasing the carers’ involvement in

physical activities) and phone calls (S. Almeida et al., 2020).

Table 2. LiFE4D design (per week)

Week 0 baseline assessment

Weeks 1–4 three face-to-face sessions/week

Weeks 5–8 two face-to-face sessions/week and a phone call every 2 weeks

Weeks 9–11 one face-to-face session/week and a phone call every 2 weeks

Week 12 post-assessment

Follow-ups 3 and 6 months after the end of the programme

The face-to-face sessions lasted approximately one hour, and telephone contacts

lasted a maximum of 15 minutes. The face-to-face sessions aimed to adapt physical

activity to everyday tasks, increase tasks frequency and intensity, monitor progress, clarify

doubts, motivate and manage expectations. The phone calls aimed to monitor

motivation/evolution and clarify doubts (S. Almeida et al., 2020, 2019). At the end of the

first month, each participant received a book with the physical activities that they might

continue to perform by themselves during their routines (S. Almeida et al., 2020, 2019).

The interviews of this study were conducted after the end of the programme during the

follow-up assessment period.

8

2.5. Data analysis

Descriptive statistics were used to characterise the sample. The interviews were

recorded in audio, transcribed in full and later analysed by deductive thematic analysis

(Azungah, 2018; Green & Thorogood, 2004; Virginia Braun & Victoria Clarke, 2006).

Deductive analysis is based on an analysis built on assumptions already defined, in the

expectation that certain central concepts are in the data (Azungah, 2018; Green &

Thorogood, 2004). So, it was chosen for this study, because the central themes for the

research had already been defined in the objective of the present study (barriers,

motivators/facilitators and impacts of the programme). The central themes were chosen,

based on the existing literature (Baert, Gorus, Mets, Geerts, & Bautmans, 2011; Farina et

al., 2020; Hobson, Dupuis, Giangregorio, & Middleton, 2020; Karssemeijer, de Klijn,

Bossers, Olde Rikkert, & van Heuvelen, 2020; van Alphen et al., 2016), the subthemes

were then coded and grouped to the central themes.

Thematic analysis is a method for identifying and reporting patterns in relation to a

specific scientific question through the experiences, meanings and reality perceived by the

participant (Braun & Clarke, 2006). In the thematic analysis under the semantic approach,

the themes are identified in the explicit or superficial meanings of the data and the

researcher looks for nothing beyond what the participant said (Braun & Clarke, 2006). This

analytical process involves a progression of description, where data is organised to show

patterns in semantic content and then summarised for interpretation (Green & Thorogood,

2004; Virginia Braun & Victoria Clarke, 2006). In this process there is an attempt to

theorise patterns and their broader meanings/implications, usually in relation to the

previous literature (Braun & Clarke, 2006). Session annotations and audio recordings were

analysed using six phases (e.g., familiarisation with the data; generation of initial codes;

search for themes, review themes; define and name themes and producing the report) of the

thematic analysis (Braun and Clarke 2006).

Data were transcribed in full from digital audio recordings and information that

could cause participant identification was removed or coded to preserve anonymity (Braun

& Clarke, 2006). Subsequently, the transcripts were read and reread for familiarisation

with the data, before the subthemes coding process began (Braun & Clarke, 2006). After

the initial coding of the subthemes, two researchers were involved in the interpretation of

the data on the subthemes found (Green & Thorogood, 2004). The two researchers read

9

and reread the sentences or sentences related to the areas of interest of the highlighted

study and classify them manually into subthemes. The initial subthemes of both

researchers were then compared, with differences eliminated by discussion and

consultation with the other authors. The interviews were then inserted into the Web

Qualitative Data Analysis (WebQDA). This software performs text, video, audio and

image analysis. The WebQDA was used to assist in the process of coding and data

management for analysis. Special attention was given to identifying positive and negative

subthemes in relation to each theme (Braun & Clarke, 2006; Green & Thorogood, 2004).

The subthemes were then refined and clustered into barriers, motivators/facilitators,

impacts of the programme, and other subthemes, separately for PwD and their carers.

Verbatim quotations were included to support the interpretation of the identified themes

and subthemes.

10

3. Results

3.1. Participants

From a total of 24 participants with dementia who engaged in the LiFE4D

programme, 2 did not accept to participate, 3 died, 4 were excluded (e.g., were not willing

to collaborate with this study due to aphasia). Thus, a total of 15 PwD were included in the

present study. From those who were included, one was a couple, and their carer was the

same, and 5 carers did not accept to participate. Thus, a total of 24 participants were

included in this study, 15 PwD (n=9, 60% female, 82 [75-84] years old, ACE-III total

score 50.4 [22-72] points) and 9 carers (n=7, 77.8% female, 72 [60-76] years old). Details

of the characteristics of the participants can be found in Table 3. Table 3. Characteristics of participants (n=24).

People with dementia (n=15) Carers (n=9)

Age (Years)

Sex ACE-III total score

(points)

No of comorbidities1

Age

(Years) Sex Relationship Living

together

John 82 Male 56 0 Kelly 76 Female Sister-in-law yes

Anne 73 Female 22 1 Beth 63 Female Sister yes

Emily 82 Female 33 1 Suzy 59 Female Daughter yes

Mariah 84 Female 31 4 NA NA NA NA NA

Anthony 75 Male 72 0 Jessy 72 Female Wife yes

Rose 81 Female 49 2 NA NA NA NA NA

Catherine 78 Female 38 1 Patrick 79 Male Husband yes

Jonathan 90 Male 69 3 Wilson 60 Male Son No Wendy 89 Female 48 1

Richard 75 Male 62 2 Evelyn 72 Female Wife yes

Caroline 84 Female 58 1 NA NA NA NA NA

Yolanda 85 Female 45 2 Martha 54 Female Daughter yes

Judith 91 Female 60 3 NA NA NA NA NA

Michael 81 Male 65 4 NA NA NA NA NA

Christian 79 Male 48 4 Clare 76 Female Wife yes

Total sample

n=15 Median [IQR]

82 [75-84]

Female 9 (60%)

50.4 [22-72] 2 [1-3]

n=9 72 [60-76]

Female 7

(77.8%)

Wife 3 (33.3%)

Yes 8 (88 %)

1 Cardiac condition, hypertension, diabetes, arthritis, arthrosis, rheumatism, cholesterol and arteriosclerosis.

Abbreviations: ACE-III: Addenbrooke´s Cognitive Examination III; IQR: interquartile range; NA: not available.

11

Most PwD were interviewed separately (n=10), the two participants who shared the

same carer were interviewed separately and all carers were interviewed alone. Five PwD

asked to be interviewed in the presence of a carer because they felt more comfortable. The

median interview time with PwD was 6min04s (longest: 16min07s; shortest: 2min34s). For

carers the median interview time was 10min38s (longest: 25min45s; shortest:4min44s).

Six (66.7%) carers reported being 100% involved in basic and instrumental care of

PwD, with 5 (55.6%) having no help from any person and 3 (33.3%) having help from

only 1 person in the care provision. The median hours of basic care (i.e., bathing, dressing)

were 4 hours a day, and for instrumental (i.e., cleaning the house, shopping) care were also

4 hours a day. Regarding the length of care, the median was 3 years (minimum 2 and

maximum 5 years). More details on the care provided by carers can be found in Table 4. Table 4. Information on the context of care provided by the carers (n=9).

Basic care

(hours/day) Instrumental care

(hours/day) People involved

in care (no) Involvement in

care (%) Length of care

(years) Kelly 5 12 0 100 2

Beth 8 8 1 100 2

Suzy 4 4 0 100 3

Jessy 4 0 0 100 5

Patrick 3 1 1 80 5

Wilson 0 0 5 40 3

Evelyn 24 24 1 100 3

Martha 4 2 0 80 -

Clare 2:30 4 0 100 2 Total sample

n=9 Median [IQR]

4 [2.8-6.5] 4 [0.5-10] 0.5 [0-1] 100 [80-100] 3 [2-4.5]

Abbreviations: IQR: interquartile range.

3.2. Thematic analysis

A total of 44 subthemes were identified from interviews. Subthemes were divided

into 4 themes: barriers, motivators/facilitators, impact of the programme and other

subthemes. PwD identified 25 subthemes - 9 (36%) barriers; 10 (40%)

motivators/facilitators, 5 (20%) impacts of the programme and 1 (4%) other subthemes.

Carers identified 19 subthemes - 5 (26.3%) barriers; 6 (31.6%) motivators/facilitators, 4

(21%) impacts of the programme and 4 (21%) other subthemes.

3.2.1. Perspective of people with dementia

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3.2.1.1. Barriers

PwD had more difficulties in naming the barriers than the motivators/facilitators, of

participating in the LiFE4D programme. Perceived barriers were related to their physical

and health limitations, not necessarily linked to the proposed physical activities of the

programme “I don't know, I don't think so, I have no difficulty in the programme (…) but I

have difficulty, because of knee pain” (Judith). The three most reported barriers by PwD

were “tiredness”, “memory problems” and “body pain”.

The identified barriers were mostly related to physical difficulties: “Walking is very

difficult; it hurts my knee. I also have a lot of pain in my arms and hands, they are always

shaking" (Judith). Tiredness was another barrier to the continuing of a physically active

lifestyle behaviour after LiFE4D: “a little, but I get tired and that’s it, I stay here [sitting

on the couch]” (Judith). The effect of these limitations together with some physical

problems sometimes lead to fear of performing certain physical activities.

The memory problems (i.e., difficulty in remembering the programme and/or the

instructor's name, or even their participation in the programme) were directly expressed by

the participant or observed during the interviews. Some participants, like Yolanda were

unable to remember the programme, saying “I don’t know (…) I don’t know what is and

what is not, no one told me” when asked about her participation and saying “I don’t know,

with [name of the professional]? Who is [name of the professional]?” when asked about

the physiotherapist who accompanied the face-to-face sessions. Some other participants

were unable to name/explain the activities, but they reproduced them with gestures (e.g.,

standing up) and showing the interviewer the physical activities that they enjoyed the most.

Another perceived barrier was the “lack of help to continue” which was mentioned

more than once, by participants who had no involvement of their carer during the research,

either due to not having a carer or even by the carer not wanting to answer the interview: "I

am alone, I have no one to accompany me in the activities" (Michael) and “What am I

going to do? I want to do some activity, but I don't know how (...) my son works all day"

(Rose)

3.2.1.2. Motivators/facilitators

PwD identified more motivators/facilitators than barriers of participating in the

LiFE4D programme. Conversely to barriers, motivators/facilitators drew the attention of

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PwD, as they deal with perceived changes in their daily lives, and were, therefore, able to

answer to these questions more easily. The three motivators/facilitators most reported by

PwD were "professional support", "emotional well-being" and "easy exercises".

Motivators/facilitators were mainly related to perceived physical and mental health

benefits and the characteristics of the programme (e.g., easy implementation/adaptation of

the programme; the person-centred format, professional support, challenging and fun

activities).

Professional support and empathy with participants “I really like it, just because of

her face, very friendly” (Rosa), “She [heath professional] has always helped me and was

very patient with my difficulties” (Jonathan) and “I had no difficulties , she [health

professional] knew how to understand my difficulties and was always attentive to me”

(Richard), along with acceptance of her limitations and identification of her abilities “I am

here because I have the opportunity to better identify my difficulties and facilities” and

“what I know that some problems have been identified and some of them have been

overcome, and we only notice what kind of things when things really happen” (Anthony);

seem to facilitate and motivate the involvement of PwD in physical activity.

Some participants also stated that physical activities were easy to perform and that

the programme was adapted to them: "I don't have to adapt to the programme, everything

was simple without complications" (…) I liked it a lot, the activities to develop were the

most suitable for me” (Anthony). Perceived physical and mental benefits were also

reported by PwD, with one participant stating "It was the kind of thing we needed to feel

good" (Jonathan) and another reporting "I had no difficulty, I liked it a lot, I liked it a lot

(...) I had the feeling of feeling relaxed” (Judith).

It was also reported that the programme helped in the relationship between the PwD

and their carer, as LiFE4D allowed carer involvement during physical activity sessions and

the carers’ support was important for these people to continue carrying out the programme

"(...) my wife started doing it with us, she is always there watching the programme's

activities" (Christian). An opportunity to fight loneliness was also reported by some

participants. The programme was perceived as an awakening of new possibilities and they

saw in physical activity a way to fight against isolation, being able to do something for

themselves by becoming more active “Without a doubt I was [before LiFE4D] isolated”

(Anthony).

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3.2.1.3. Impacts of the programme

The three most reported impacts of the programme, perceived by PwD were

continued to practice physical activity, physical well-being and overcoming personal

limits. The motivation, after realizing the improvements that physical activity brought to

their independence and well-being: “Going up and down stairs, for example, I was unable

to do it for a long time” (Anthony), coupled with the simplicity of replicating the exercises

at home: "I practically exercise every day, always walk, go to the bathroom and come

back, and try to do what I can" (Judith), lead to most participants to continue to perform

physical activities after the end of the LiFE4D intervention.

The opportunity to be moving more through LiFE4D led to feelings of physical well-

being and overcoming personal limits, such as starting a physical activity after the age of

eighty "(...) I didn't do activities. I only started when she (the instructor) came here"

(Michael) and maintaining independence in the ADLs “Getting up alone I couldn’t do it,

now (…) I wasn’t able to do it” (Anthony).

LiFE4D also provided benefits for participants' emotional health as they were able to

do to do something for themselves and their carer, as reported by Christian “It [LiFE4D]

had an impact for the better in both my life and my wife's”, leading to new possibilities,

feelings of inclusion and belonging to the environment around them.

3.2.1.4. Other subthemes

The subtheme "complement to other physical activities", was found as reported by

Christian who at the time of the follow up assessment attended an institution that offered

physical activity in group "It had an impact for the better, because in the institution where

I participate, they don't do gymnastics like that. The ones we do here [LiFE4D] are more

difficult and the interventions complement each other" (Christian).

3.2.2. Perspective of carers

3.2.2.1. Barriers Similarly to PwD, carers identified fewer barriers than motivators/facilitators when

participating in LiFE4D. The three most reported barriers were tiredness, carer conflicts

and reduced contact over time. Tiredness was the most reported barrier, accompanied by

the feeling of guilt for being unable to dedicate themselves as much to care as they would

like, as reported by Evelyn “He does little exercises, when the instructor came here, he did

15

little exercises with his legs and arms, but it is tiring for me to continue the exercises” and

Suzy, who besides the fatigue also reported the lack of time to carry out the programme "I

can say that the programme could have been more productive if there was really more

availability of my part to continue the exercises, but I am not with her (person with

dementia) during the day”.

Another identified barrier was carer conflicts, specifically related to communication

difficulties, changes in mood and behaviour of PwD: “He does not do activities with me,

he is upset, doesn't listen to me, he gets tired very fast (...) when the instructor is here, he

finds it funny and doesn't complain” and Beth “She is very lazy, she does not collaborate

much, she is lazy and stubborn (...) she did not like physical exercises, and she was upset”.

Reduced contact over time was also reported as a barrier. LiFE4D included three

face-to-face physical activity sessions in the first four weeks and then there was a

progressive decrease in this contact until the end of the programme at twelfth week. The

progressive decrease of the face-to-face contact with the health professional turned out to

be a barrier, as the changes perceived in the first month were very significant for carers "It

was great, it is a pity that the 3 months of the programme were not three days a week "(...)

the first month was great, there were many improvements" (Jessy) and “They (my parents)

did different things, they thought it was funny, they did a very big competition. It was

funny, the pity is that it started to be once a week and then it got more spaced” (Wilson).

3.2.2.2. Motivators/facilitators

The three motivators/facilitators most reported by carers were professional support,

the setting and the social contact. The professional support and empathy established

between the professional and the PwD and their carers were highly valued in the

interviews. A good example of this emotional component is reported by Patrick: “the girl

[health professional] arrived and it was very different, it was like putting gasoline on the

fire, it burned fast. She achieved with her in 15 days what other people have not achieved

in 2 years. There is no doubt about it. It also has a lot to do with people's ability to

empathise. It has a lot to do with it, no doubt the instructor was what she needed” and

Wilson “The physiotherapist has a sensitivity and a way to do this [the programme] (...) it

is very difficult to empathise with her [my mother] but she did it”.

The setting and simplicity of performing the exercises were also important

motivators for carers, since the PwD did not need to leave the house for having a

16

professional who adapted physical activities: “I think that the programme at home is better

than walking with her to other places (...) she [the wife] gets tired and doesn't like to leave

the house” (Patrick).

Social contact obtained from LiFE4D was also perceived as important by carers

“They (my parents) were always anxious for her (instructor) to arrive. My mother said that

she liked to do that, she thought it was fun” (Wilson). Indirect improvement in social

contact was also obtained since physical and mental well-being improved and therefore,

allowed PwD to make their social contacts easier, with less restrictions.

Another motivator/facilitator reported in the interviews was the opportunity to learn

more about dementia and information about care and health “we know little or nothing

about this type of problem, they explained to us, whether in conversation (...) or in writing,

they left information here” (Beth); “I stimulate him a lot because I am afraid. I am afraid.

I know that when a person loses the ability to walk it is the beginning [of dependence]”

(Kely).

3.2.2.3. Impacts of the programme

Carers reported on the impacts that the programme had on various aspects, both in

the lives of their loved ones and in their own lives. The three most reported impacts by

carers were physical benefits, emotional support/impact on loved ones and improvements

on ADL.

Regarding to their loved ones, the main aspect mentioned by carers was the

improvement of mobility and increased independence, especially when the sessions were

held three times/week: “I think that in the motor aspect while the exercise was practiced,

with that weekly regularity, it improved” (Suzy). The impacts during the first month were

also perceived to improve other important domains “At that time, three times a week, my

mother clearly noticed big differences from one day to the next, and even in the reports the

instructor did, even in terms of behaviour and attitude, because my mother was very

closed” (Wilson).

The emotional support, clarifications about dementia, care and attention received

from health professionals were most valued by both, carers (i.e., Patrick: “I think she has

become more active, more sober, has a different look, as she had before”) and PwD (i.e.,

Beth: “These things motivate us a little bit”).

17

Improvements on ADL were also perceived by carers. Important improvements in

performing and/or recovery of movements, in activities such as walking, eating, brushing

teeth, getting out of bed and dressing were evidenced in the interviews “I will be very

sincere, the programme changed my husband a lot, he did not walk ... now he walks and

can eat alone” (Clare).

3.2.2.4. Other subthemes

Most reported subthemes by carers were carer burden and gratitude. Carers

expressed a feeling of gratitude to the programme and professionals involved, and showed

a desire to continue with it, as they felt changes in themselves and in their loved ones.

Another subtheme that emerged from the interviews was the replication of LiFE4D on

other settings (i.e., nursing homes and day care centres), one carer argue that LiFE4D “in a

space like this (nursing home) that [programme] would happen once or twice a week, or

also transmit the people who work in these entities the work that you are doing, which

should be more publicised because it is very interesting, because I think it was extremely

interesting. I really liked it” (Wilson).

Improvements on mobility and increased independence, especially in basic ADL,

helped the burden of care become lighter and easier “my husband has changed a lot (…)

the programme changed my husband a lot, now he brushes his teeth and combs his hair"

(Clare). More details on the themes can be found in Table 5 and Table 6.

Table 5. Barriers, motivators/facilitators and impacts of participating in the LiFE4D programme according to people with dementia (n=15).

Themes identified by participants with dementia

Number of participants Representative quotes

Barriers

Tiredness 6 "It's not like it used to be (...) now when I walk, I already feel breathless" (Rose)

Memory problems 6 “Everything can be good, but I don't remember anything, I don't remember any of that” (Yolanda)

Body pain 3 "I walk with a lot of difficulties, my kidney hurts, my hip hurts" (Rose)

Physical problems 2 "The vision and hearing problems disturbs me a lot" (Anthony)

Lack of help to continue 2 "(..) sometimes I want to move, but I don't know how, it is difficult alone" (Rose)

18

Lack of time 1 “I have no time” (Judith)

Fear 1 “I am also afraid of these things (physical activity)” (Emily)

Difficult to restart physical activity even with short breaks 1

“I notice this especially when I don't practice the exercises. At weekends, for example, when I decrease activities, I notice that something was missing” (Anthony)

Lack of outreach 1 “I think there was little visibility for the programme, little publicity (…) some tv advertisement, or flyers on the road (…)” (Richard)

Motivators/facilitators

Professional support 6 "The instructor did a good job, and I can consider it very good" (Jonathan)

Emotional well-being 5 “I found that (programme) very fun” (Jonathan)

Easy exercises 4 I had no difficulties, nothing was complicated" (Jonathan)

Easy to adapt 3 "What I see, and highlight is that there is no difficulty, the programme is easy to access and has quality" (Richard)

New challenges 2 “The gym at the institution is very different from the (LiFE4D) programme (…) LiFE4D is more challenges than the programme at the institution” (Christian)

Person-centred approach 2 "(…) doctor's receptivity to hear my difficulties made me feel free to expose myself without fear" (Richard)

Physical benefits 2 “I liked it a lot, because I had the impression that I stretched my tendons, left me relaxed, because they were all trapped" (Judith)

Carer involvement 2 "(...) my wife started doing it with us, she is always there watching the programme's activities" (Christian)

Fighting loneliness 2 “Without a doubt I was [before LiFE4D] isolated” (Anthony)

Find how to be physically active 1 “I wouldn’t change a thing, (…) because I like to be active, but sometimes I want to be active, but I don’t know how (before the programme)” (Rose)

Impacts of the programme

Continued to practice physical activity 7 "I practically walk every day and almost every day I do the

exercises with my hands and feet" (Richard)

Physical well-being 3 "(...) I liked it a lot, I liked it because I had the impression that I stretched my tendons and relaxed" (Judith)

Overcoming personal limits 3 “Going up and down stairs, for example, I wasn’t able to do it for a long time. Without a doubt, we improve and only after we perceive the real benefits" (Anthony)

Started to practice physical activity for the first time ever 1 "(...) I didn't do activities. I only started when she (the

instructor) came here" (Michael)

Positive impact on carer 1 “It [LiFE4D] had an impact for the better in both my life and my wife's” (Christian)

Other subthemes

Complement to other physical activities 1

"It had an impact for the better, because in the institution where I participate, they don't do gymnastics like that. The ones we do here are more difficult and the situation is better completed" (Christian)

19

Table 6. Barriers, motivators/facilitators and impacts of participating in the LiFE4D programme according to carers perspective (n=9).

Themes identified by carer and/or significant person

Number of participants Representative quotes

Barriers

Tiredness 3 “He does little exercises, when the instructor came here, he did little exercises with his legs and arms, but it is tiring for me to continue the exercises” (Evelyn)

Carer conflicts 2 “If he goes with the instructor, he does the exercises. When he

is with me, he says he is tired and does not do it” (Clare)

Decreased contact over time 2

They (my parents) did different things, they thought it was funny, they did a very big competition. It was funny, the pity is that it started to be once a week and then it got more spaced” (Wilson)

Mood and behaviour changes 1 "She is very lazy, she does not collaborate much, she is lazy and stubborn (...) she did not like physical exercises, and she was upset" (Beth)

Lack of time 1

"I can say that the programme could have been more productive if there was really more availability on my part to continue the exercises, but I am not with her (person with dementia) during the day" (Suzy)

Motivators/facilitators

Professional support 4 “The instructor has a sensitivity and empathy, she (instructor) did a fantastic job with great care and attention to my wife's needs" (Patrick)

Setting 2 “It is evident that the home programme is better, for the patient it is better” (Patrick)

Social contact 2 “They (my parents) were always anxious for her (instructor) to arrive. My mother said that she liked to do that, she thought it was fun” (Wilson)

Opportunities to learn 2

“The instructors explained the difference between senility and Alzheimer's (...) and I already wanted to know a little more. For two or three times the instructor brought written information" (Kely)

Easy exercises 1 “The exercises they did at home were very simple and easy to do" (Wilson)

Fear of dependence 1 “I stimulate him a lot because I am afraid. I am afraid. I know that when a person loses the ability to walk it is the beginning [of dependence]” (Kely)

Impacts of the programme

Physical benefits on loved ones 8 “Physiotherapy was good. It improved some aspects of my mother; she walks more easily” (Martha)

Emotional impacts on loved ones 5

“I used to say, Catherine was resurrected, emotionally resurrected. I think she became more active, more sober, has a different look than before, already answers a lot and also asks some questions” (Patrick)

Improvements on activities of daily living 2 “I will be very sincere, the programme changed my husband a

lot, he did not walk ... now he walks and can eat alone” (Clare)

Emotional support 1

“The instructors gave us a lot of strength and support when talking to us, any of the two who came here were good, spectacular (...) it was good because we were very discouraged” (Beth)

20

Other subthemes

Carer burden 3 "I'm 76 years old, and taking care of someone with dementia, is difficult. I was exhausted” (Clare)

Gratitude 2 “That’s why I say, stay as you are, don’t change, keep doing it, it is very well, you helped us a lot” (Patrick)

Transferability to other settings 1 “This should be a programme applied everywhere, like here (nursing homes), in the physical point of view, there are no exercises, like getting up from the chair” (Wilson)

Difficulties understanding questionnaires 1

“I didn’t have difficulty, only in some questions when they came at the beginning with the questionnaires” (Evelyn)

3.3. Contextual notes

After the interviews, contextual notes were made to assist in the coding and

identification of the subthemes. Due to the cognitive impairment of some participants, only

the audio, without notes, would not be enough to give the dimension of the entire context

of the interview. Humour, interview context and non-verbal behaviour were noted. Three

notes were common and frequent among the interviews with PwD: changes in mood

during the interview (agitation peaks), memory difficulties (naming people and activities)

and use of body language and facial expressions (especially when PwD could not

remember names and activities, they reproduced them with gestures).

21

4. Discussion

This study identified barriers, motivators/facilitators and impacts of the LiFE4D

intervention in the perspective of those who participated, i.e., PwD and their carers’. Our

findings showed that: 1) participants perceived more motivators/facilitators (10 in PwD

and 6 in carers) than barriers (9 in PwD and 5 in carers) to participate in LiFE4D; 2) there

were common perceived motivators/facilitators: easy exercises and professional support;

and barriers: tiredness and lack of time between PwD and their carers; 3) only positive

impacts of participating in LiFE4D were perceived by PwD and their carers.

Participants had an overall positive perspective of participating in the LiFE4D.

Strategies used to minimise the already known possible barriers when engaging PwD and

their carers in physical activity programmes might explain this positive perspective.

Firstly, the LiFE4D programme was designed based on the literature (Clemson et al.,

2012) and characteristics such as session format; individualised physical exercises; carer

involvement (whenever possible); consideration of individual needs (PwD and carer) and

home context were considered in the design of the programme. The adapted exercises

(easy to perform), home format and professional support were reported by participants as

important and essential motivators for the adherence and conclusion of the programme,

characteristics already pointed out in the literature as effective in motivating older people

with or without dementia to adhere to physical activity programmes (Baert et al., 2011;

Farina et al., 2020; Hancox et al., 2019; Hobson et al., 2020; Karssemeijer, De Klijn,

Bossers, Olde Rikkert, & Van Heuvelen, 2018; Suttanon, Hill, Said, Byrne, & Dodd, 2012;

van Alphen et al., 2016; van der Wardt et al., 2017). In other words, barriers such as travel

difficulties and/or access to infrastructure (Baert et al., 2011; Hobson et al., 2020),

adaptation of physical activity (individual exercises) (van Alphen et al., 2016) and support

from carers and/or health professionals (Nyman, 2019; Nyman et al., 2017; van Alphen et

al., 2016; van Stralen, de Vries, Mudde, Bolman, & Lechner, 2009) were therefore

eliminated, facilitating the involvement of participants in the LiFE4D programme.

Both groups reported “tiredness” and “lack of time” as barriers and “easy exercises”

and “professional support” as motivators/facilitators , similar subthemes previously

identified in the literature (Baert et al., 2011; Farina et al., 2020; Karssemeijer et al., 2018;

van Alphen et al., 2016). The simplicity of performing the proposed exercises was a key

22

motivator to PwD as they felt capable of carrying out the programme, the exercises were

attractive, challenging and fun. From the perspective of carers, the simplicity of carrying

out the exercises helped them to continue the programme when the health professional was

not present. PwD also emphasised the empathy, patience, attention and care of the person

accompanying them in the activities as essential for their participation in the programme

as, they felt safer to perform the exercises. The importance of the support received,

whether from a professional or a carer, to maintain a more active behaviour in older people

and PwD has been acknowledged previously (Baert et al., 2011; Nyman et al., 2017; van

Stralen et al., 2009). Carers valued especially the "professional support" since they

perceived that specialised care, tailored to their loved ones had been provided and

simultaneously provided them with the opportunity of having a moment of rest and/or to

resolve other issues while the professional conducted the sessions.

Important barriers were however identified in this study. PwD identified barriers

related to physical, cognitive and support difficulties. Physical difficulties (e.g., body

aches, tiredness, vision and hearing problems) apply not only to PwD, but also to older

elderly people with or without cognitive impairment, are characteristic of the aging process

where the progressive deterioration of the body's physiological function, results in

decreased health (López-Otín, Blasco, Partridge, Serrano, & Kroemer, 2013; Mori, 2020),

thus, and are not necessarily related to the participation in a physical activity programme

(Hobson et al., 2020; Kim, Ullrich-French, Bolkan, & Hill, 2018).

Symptoms of dementia (e.g., memory problems, apathy, changes in mood and

behaviour) (American Psychiatric Association, 2014), may justify the cognitive barriers

expressed for example in the difficulty of remembering the actions to perform the exercises

even after having already performed them repeatedly (Farina et al., 2020; Hancox et al.,

2019; Hobson et al., 2020; van der Wardt et al., 2019). Thus, support, i.e., presence of the

carer (and/or health professional) was perceived as fundamental to continue the

maintenance of an active behaviour, which is not always possible due to the difficulties

encountered with the progression of the symptoms of dementia, or even due to the absence

of a carer or health professional.

Support difficulties are related to the lack of support to continue activities when the

health professional is not present. This difficulty is justified by carers when reporting the

"carer conflict" barrier. According to the carers, carer conflict made it difficult to provide

23

support in the execution of physical activities when the health professional was not present.

The main difficulties reported were due to changes in behaviour (e.g., agitation and apathy)

and humour; and communication difficulties (David et al., 2012; Van Alphen et al., 2016).

Which leads to the need for more studies that can identify ways to adjust the need for

support of PwD in the practice of physical activities, with the carers difficulty in offering

this support, whether at an instrumental level (execution of activities, more efficient and

assertive communication) as emotional (use of coping strategies).

Moreover, “tiredness and lack of time”, which are aspects known to add challenges

to the maintenance of physical activity in the daily life of PwD were also barriers reported

by carers (Baert et al., 2011; Farina et al., 2020; Gobbi et al., 2012). An important note

about the “tiredness” of carers in the present study was their age, the average was 72 years

old among carers and 82 years old among PwD. Carers were older people caring for older

people with dementia. The accumulation of activities divided between basic and

instrumental care, added to the difficulties inherent in aging increased the burden felt by

carers (Baert et al., 2011; Nyman, 2019; van Alphen et al., 2016).

Despite all challenges, it was evident that the programme had a major positive

impact on participants' lives, both in physical and health aspects as well as emotional one.

Physical well-being was an impact perceived by both groups, in PwD in the subtheme

"physical well-being" and in carers in "physical benefits for the loved one" (Baert et al.,

2011). This suggests that emphasizing the benefits to physical well-being and health can be

an important element for adhering to physical activity programmes (Karssemeijer et al.,

2018). Namely, in this study in particular, the physical impact was perceived in the

functional improvement of PwD (Dawson, Judge, & Gerhart, 2010; Gonçalves, Marques,

Samuel, & Demain, 2019; Vreugdenhil, Cannell, Davies, & Razay, 2012b), where the

increase in independence in ADL (e.g., eating, dressing, walking and getting out of bed)

had a direct impact on relieving the overload of carers (Gonçalves, Samuel, Ramsay,

Demain, & Marques, 2020), reported by both groups. Another important factor that

favoured the positive impact of the programme was the format. The person-centred

approach, followed by LiFE4D, has been shown to increase the level of activities in PwD

(Baert et al., 2011; Karssemeijer et al., 2018). Participation in an individualised

programme made the experience more attractive; the focus on the difficulties of each

participant contributed to the positive physical impacts being significant.

24

Emotional support was also mentioned in both groups, described by the participants

as: feeling of well-being; acceptance of difficulties; overcoming limits and clarifying

doubts. This support helped participants to continue the programme. Upon receiving

emotional support, the PwD felt more capable (physically and mentally) to carry out the

programme, it also aroused the feeling of overcoming difficulties; emotional well-being

when doing something for health (Karssemeijer et al., 2018) and encouragement in the

fight against loneliness (Gonçalves et al., 2020). The carers, in turn, reported this support

in the reception received by the health professional, felt more relieved to have someone to

share their emotional difficulties in dealing with the evolution of dementia, as well as in

clarifying their doubts and concerns regarding the care provided to loved ones (Gonçalves

et al., 2019). Giving voice to PwD and their carers was important, as it aroused the feeling

of inclusion and belonging to the programme (Brooks et al., 2017).

Finally, although there are some subthemes in common, barriers,

motivators/facilitators and impacts were found to differ between PwD and their carers.

Understanding the dynamics between PwD and their carer and thinking about strategies to

help to reduce barriers can make physical activity more attractive and increase adherence

(Farina et al., 2020; Woodbridge et al., 2018). That is why more studies are needed

involving PwD and their carers to better understand their family dynamics (e.g., to

introduce meaningful and realistic strategies in their routines) and their perceptions about

physical activity, and later explore this in the development and improvement of physical

activity programmes aimed at this population.

The present study has some limitations that need to be recognised. First, only PwD

who voluntarily participated and completed the LiFE4D programme were included in this

study. PwD and their carers reported only positive impacts about LiFE4D participation,

which might have been influenced by the social desirability. The perception of those who

refused to participate, and their carers may be different, namely regarding the obstacles to

complete the programme. This limits the generalisability of the findings of the present

study. In addition, people with aphasia and without the ability to consent were excluded. It

is likely that their perceptions are different from those included in this study. Identifying

reasons, in the perspectives of PwD and their carers, that can lead to abandonment and/or

refusal to participate in a home-based physical activity programme and including people

with aphasia and people unable to consent, would be of added value to design future and

25

meaningful interventions. Secondly, five PwD were accompanied by their carers in the

interviews, which may have inhibited them from giving the answers that expressed their

opinion not to upset their relative. Nevertheless, the presence of the carer was requested by

the PwD and therefore, their wish was respected. Thirdly, social and economic factors

were not explored in this study and may constitute barriers or motivators to be further

explored.

26

5. Conclusion

This study highlights motivators/facilitators, barriers and impacts of the LiFE4D

programme on people with dementia and their family carers. Participants perceived more

motivators/facilitators than barriers of participating in LiFE4D. The individualized person-

centred approach, and the carers involvement facilitated adherence to the programme.

Features such as home format, simple and easy exercises to perform, and which fit into the

daily routine, combined with the professional support received were highlighted in this

study as motivators/facilitators for both participants. Difficulties such as tiredness, physical

health problems and lack of time were seen as main barriers. Only positive impacts of

participation in LiFE4D were perceived by PwD and their carers. Although there are some

subthemes in common, there were motivators/facilitators, barriers and impacts that differed

between PwD and their carers. Such differences must be explored in order to improve

physical activity interventions directed at this audience.

27

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Annex I - Ethics approval

34

Appendix I - Participants information sheet

Código:_______

Protocolo de Recolha de Dados Dados de Identificação

(Informação a destacar do protocolo)

Data_____/_____/_________(dia/mês/ano)

Código:__________________

Nome___________________________________________________________________________________________________________

Data de Nascimento ______/_______/___________ (dia/mês/ano)

Morada_____________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Telefone/Telemóvel__________________________/__________________________

E-mail________________________________________________________________________________________________________________

________________________ Nome do Investigador(a)

_________ Data

___________________________ Assinatura

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Appendix II - Interview guide carer

Código:_______

O LiFE4D está em implementação há um ano mas desconhece-se qual o seu impacto na perspetiva das pessoas que participaram nesta intervenção. Assim, esta entrevista tem como objetivo avaliar o programa na perspetiva dos participantes.

CUIDADOR INFORMAL/ PESSOA SIGNIFICATIVA

INFORMAÇÃO SOCIODEMOGRÁFICA

Descrição do Prestador de Cuidados Principal

C1. Idade ______ anos

C2. Sexo: 1.Masculino 2.Feminino

C3. Relação com o Doente:

1. Cônjuge 4.Amigo

2. Irmão/ã 5.Outro ____________

3. Filho

C4. Número de filhos atualmente a residirem consigo:_______ Filho(s)

C5. Há quanto tempo presta cuidado? ____________________

C6. Qual o tipo de cuidados que presta com maior frequência? __________________________

C7. Vive com o doente? 1. Sim 2. Não

C8. Quantos outros prestadores de cuidados estão envolvidos na assistência?

0 1 2 3 4 ou mais

C9. Entre todos os prestadores qual o seu nível de contribuição?

1. 1-20% 2. 21-40% 3. 41-60% 4. 61-80% 5. 81-100%

Entrevista pré intervenção do programa C10. Como teve conhecimento do programa? C11. Quais as suas expectativas para aderir ao programa? C12. Consegue identificar barreiras/dificuldades a participar no programa? C13. Consegue identificar facilitadores/aspetos que ajudam a participar no programa? Entrevista pós intervenção do programa C14. O que achou do programa? C15. Na sua opinião quais foram as barreiras/dificuldades de participar no programa? C16. E os facilitadores/aspetos que ajudaram à sua participação? C17. Continua a fazer atividade física sozinho/com ajuda?

C17.1 Se sim, O que o motiva a continuar? C17.2 Se não, Quais as razões para parar?

C18. Que impactos ou efeitos teve o programa em si? C19. E na pessoa a quem presta cuidados? C20. O que mudava no programa?

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Appendix III - Interview guide people with dementia

Código:_______

PESSOA COM DEMÊNCIA INFORMAÇÃO SOCIODEMOGRÁFICA

P1. Género (1) [ ] Feminino (2) [ ] Masculino

P2. Idade _____________anos

P3. Habilitações literárias:

(1) Não frequentou o ensino formal [ ] (2) Até ao 1º ciclo Ensino Básico (4º ano) [ ] (3) Até ao 2º ciclo Ensino Básico (6º ano) [ ] (4) Até ao 3º ciclo Ensino Básico (9º ano) [ ] (5) Até ao Ensino Secundário (12º ano) [ ] (6) Curso Médio [ ] (7) Ensino Superior [ ]

P4. Estado Civil:

(1) Solteiro [ ] (2) Casado [ ] (3) Separado [ ] (4) Divorciado [ ] (5) Viúvo [ ] (6) União de facto [ ]

P5. Com quem vive? (1) sozinho [ ] (3) filhos(as) [ ] (5) outro(a) [ ] (2) esposo(a) ou Companheiro(a) [ ] (4) lar [ ] Quem __________

P6. Ocupação habitual: (1) Trabalho remunerado [ ] (2) Trabalho não remunerado [ ] (3) Estudante [ ] (4) Trabalho doméstico [ ] (5) Reformado [ ] (6) Desempregado (motivo saúde) [ ] (7) Desempregado (outros motivos) [ ] (8) Outro Especifique________________ [ ]

P7. Comorbilidades Colesterol [ ] Arteriosclerose [ ] Acidente Vascular Cerebral [ ] Osteoporose [ ] Doença cardíaca [ ] Doença pulmonar crónica [ ] Hipertensão [ ] Cancro [ ] Diabetes [ ] Depressão [ ] Artrite [ ] Outros: ___________________

P8.Diagnóstico principal _________________________________________________________

P9. Medicação (prescrita pelo médico ou adquirida sem receita médica) (1) NÃO [ ] (2) SIM [ ] se SIM, especificar quais ______________________

Entrevista pré intervenção do programa P10. Quem lhe falou sobre o programa? P11. Quais são as suas expectativas para realizar as atividades? P12. Consegue identificar barreiras/dificuldades a participar no programa? P13. Consegue identificar facilitadores/aspetos que ajudam a participar no programa? Entrevista pós intervenção do programa P14. O que achou do programa? P15. Na sua opinião quais foram as barreiras/dificuldades de participar no programa? P16. E os facilitadores/aspetos que ajudaram à sua participação? P17. Continua a fazer as atividades?

P14.1 Se sim, o que o motiva a continuar? P14.2 Se não, porque parou de os fazer?

P18. Que impactos ou efeitos teve o programa em si? P19. E na pessoa que esta mais perto de si? P20. O que mudava no programa?