Dementia lifestyle coach pilot program

Abstract

Objectives

This study aimed to conduct a feasibility pilot of the Dementia Lifestyle Coach program; an individual coaching and counselling program for people recently diagnosed with dementia, to help them to adjust to the diagnosis and live well.

Methods

A randomised controlled pilot trial (n = 11) with wait‐list control group was undertaken over 12 months. Intervention group participants received immediate personalised counselling from a registered psychologist and monthly support (face‐to‐face or by telephone) from a trained peer mentor living with dementia. The wait‐listed control group commenced treatment 6 months after baseline.

Results

Recruitment and delivery of the Dementia Lifestyle Coach program was highly feasible. The program was acceptable, with nine of the 11 participants describing benefits including informational and emotional support, improving their outlook and mood, and family relationships. The planned program was adapted to participants' individual needs.

Conclusions

This small pilot showed that it is feasible to recruit for and deliver a counselling and peer mentoring program for people recently diagnosed with dementia. A larger hybrid implementation randomised control trial should be conducted to evaluate efficacy and effectiveness.

Policy impact

This small randomised controlled pilot showed that it is feasible to recruit for and deliver a counselling and peer mentoring program for people recently diagnosed. These results have informed the development of counselling and peer support programs such as those provided by Dementia Australia.

Practice impact

Clinicians who diagnose dementia should consider referring to the Dementia Australia post‐diagnostic counselling and peer support programs based on the needs and interest of the person living with dementia and carer.

1. INTRODUCTION

People with dementia are, in general, dissatisfied with their care following diagnosis. ¹ Postdiagnostic support services for dementia aimed at helping people to continue living well in the community, provide information and support, help people to manage issues as a result of getting a diagnosis; and delay admission to long‐term residential care. ² Support services commonly provided immediately after diagnosis are pharmacotherapy (e.g. anticholinergic medications) and information. ² , ³ However, 54% of newly diagnosed people living with dementia and carers received inadequate information about dementia and its management, ³ and there are also systemic and attitudinal barriers to provision and access to other services such as allied health.

Additionally, some people say that their treatment by healthcare professionals following diagnosis is unhelpful, unsupportive and potentially harmful. Swaffer described her postdiagnostic experience as ‘Prescribed Disengagement’®. ⁴ She was told ‘to give up work, give up study, and to go home and live for the time I had left’. ⁴ Aligned with this, a systematic review of 35 qualitative studies, including 373 people with early dementia, found that the diagnostic and post‐diagnostic processes contribute to disempowering people with dementia and exacerbating self‐stigma. ⁵

People with dementia experience loss, need time to make sense of their diagnosis and may require support‐adjusting. ⁶ Despite evidence demonstrating the benefits of counselling, ⁷ it is not routinely offered to people with dementia. ⁸ Potential barriers to counselling include healthcare professionals' proclivity towards pharmacotherapy for anxiety and depression despite poor efficacy, ⁸ lack of knowledge on potential benefits and misbelief that people with cognitive impairment are not able to engage in this form of therapy, availability and costs. A Cochrane review of six randomised controlled trials concluded that psychological interventions (CBT, counselling, and international psychodynamic therapy) can reduce depression and anxiety in people with mild dementia. ⁹ There is growing evidence that acceptance commitment therapy (ACT) is efficacious for the treatment of depression and anxiety, as well as improving outcomes (e.g. quality of life and symptom control) in chronic conditions. ¹⁰ However, not all randomised controlled trials of counselling have had positive outcomes. ¹¹ , ¹² In these studies, non‐significant positive effects were attributed to the control group being offered some form of intervention above what is ‘treatment as usual’ that in itself may have been effective in preventing clinical depression in controls. This included regular follow‐ups allowing control participants to discuss new psychosocial and health issues, receive information and obtain referrals to relevant health professionals. ¹² The authors also acknowledged that they were unable to provide individualised counselling tailored to participants' needs. ¹¹ , ¹² Employing a trained nurse to provide the counselling ¹¹ , ¹² instead of a registered psychologist may have also affected how sessions could have been effectively tailored to each participant. Peer support may complement counselling by reducing self‐stigma and isolation after dementia diagnosis. The few qualitative studies found that dementia peer support reduces isolation and loneliness, creates a sense of belonging, and redefines what living with dementia means. ¹³

The aim of this study was to conduct a feasibility pilot of the Dementia Lifestyle Coach (DLC) program, a personalised counselling program for people recently diagnosed with dementia, to help them to adjust to the diagnosis and live well. The pilot aimed at describing the following:

1. participant recruitment and retention;

2. the fidelity and adherence to intervention by therapists and participants;

3. the acceptability and applicability of program to participants, enablers and barriers to participation;

4. the appropriateness of potential outcome measures (face validity, ceiling and floor effects, acceptability to participants, time taken).

2. METHODS

2.1. Participant recruitment

Participants were recruited through print and radio media, advertisements in local newspapers and flyers distributed through the Brain and Mind Centre's Healthy Brain Ageing Clinic. ¹⁴

Inclusion criteria

• Received a diagnosis of any type of dementia within the preceding 12 months at point of application

• Mini‐Mental State Examination (MMSE) score > 18 adjusted for age and education

• Able to provide written consent to participate in the program

• Able to keep written diaries, or has a co‐habiting person willing to help record this information

• English‐speaking

• Has home or mobile telephone

Exclusion criteria

• Experiencing psychotic symptoms or suicidal

• Participating in another intervention study

Participants were not required to have a care partner to participate in the study. Written informed consent was obtained from all participants after reading the participant information sheet and discussion about the study with the researcher. Ethics approval was obtained from the HREC of the University of Sydney (Project Number: 2017/962) and was registered with the ANZCTR (Trial ID: ACTRN12618000549224; Registration Date: 12/04/2018).

2.2. Design

Randomised controlled pilot trial with wait‐list control group. Intervention group participants received immediate treatment while the wait‐listed control group commenced treatment 6 months postbaseline (Figure 1).

FIGURE 1.

Dementia lifestyle coach study flow chart.

2.3. Intervention

The Dementia Lifestyle Coach program consisted of 6–14 sessions of psychoeducation, counselling and coaching. One hour long face‐to‐face sessions with a registered psychologist were held weekly for the first 2 months, then fortnightly for 2 months, then monthly for the last 2 months (i.e. 14 sessions over 6 months). Additionally, participants received monthly support either face‐to‐face or by telephone from a trained, paid peer mentor living with dementia.

The program was built on a frame of Acceptance Commitment Therapy, ¹⁵ and included elements of positive psychology ¹⁶ and coaching. ¹⁷ Participants chose, in consultation with their coach, to invite a family member or supporter to attend some of the sessions.

The program consisted of three stages:

1. Adjusting to the diagnosis (sessions 1–6) – reframing what it means to have dementia.

2. Living a good life (sessions 7–12) – values‐based living, goal setting, achieving ≥150 min a week of physical, cognitive and social activity, referrals as appropriate for occupational therapy, speech pathology, cognitive rehabilitation or physiotherapy.

3. Planning for change (sessions 13–14) – emotional and practical strategies.

Peer mentors living with dementia were recruited through Dementia Australia and Dementia Alliance International, received 8 h of training and were supported through monthly group meetings and individual debriefing. The peer mentoring component has been described previously. ¹⁸

The psychologist (coach) set therapeutic goals based on problems articulated by participants. The goals included: improving understanding and awareness of the diagnosis, facilitating adjustment, facilitating a narrative around the diagnosis and drawing out their strengths and problem‐solving risk, reducing issues like prescribed disengagement, increasing connection to peers and supports, improving mood and anxiety, facilitating communication between carer and the person with dementia. Additionally, the coach encouraging the practice of a healthy lifestyle including social connection, physical exercise, cognitive activity, and when needed, assisted with case management (e.g. driving support, obtaining aged care services).

2.4. Randomisation

Randomisation was completed by an independent researcher using random number generator software (https://www.randomizer.org/). Allocation assignment was concealed in individual numbered envelopes and opened by the therapy team after the participant enrolment and baseline data collection.

This study was not blinded. Participants, peer mentors and therapists, and data collectors had knowledge of group membership.

2.5. Data collection

Quantitative data were collected through face‐to‐face assessments at baseline, 6‐month and 12‐month follow‐up at the University of Sydney. Data were entered and analysed using SPSS. Participant retention data included attendance of psychoeducation counselling and peer mentoring sessions.

The following were collected as potential outcome measures for a full trial:

1. quality of life (QOL‐AD) ¹⁸

2. self‐efficacy (Generalised Self‐Efficacy Scale) ¹⁹

3. cognitive function (ADAS‐COG‐plus) ²⁰

4. physical function (short physical performance battery and 6 metre walk)

5. perceived and objective social support (Duke Social Support) ²¹

6. positive outlook (Flourishing Scale) ²²

7. depression (15‐item Geriatric Depression Scale) ²⁴

8. physical activity (pedometer worn for 1 week)

9. level of physical, mental and social activities—activity diaries completed by participants

The following qualitative data was collected via interviews at baseline, 6 months and 12 months:

• jBaseline: participant expectations on the program
• k6‐months: (wait‐listed controls)—changes in participant expectations;

  (Intervention group)—whether the program met expectations; program evaluation questions (including difference the program made, usefulness of the program and improvements)

• l12‐months: (wait‐listed controls)—refer to 6‐month questions for intervention group

  (Intervention group and wait‐listed controls); would they recommend the program to others.

Interview audio recordings of 11 participants, three peer mentors, one lifestyle coach and one project co‐ordinator were transcribed verbatim and analysed using conventional content analysis in a deductive process ²⁴ using NVivo software (QSR International 2018). Interviews with the lifestyle coach and the project co‐ordinator were included to provide unique insights into study feasibility from the research team's perspective. Initially one researcher coded preliminary themes and subthemes. A second researcher independently coded 20% of the transcripts to ensure thematic integrity, with disagreement resolved through discussion to consensus. Subsequently, one researcher conducted the remaining thematic analyses with regular, reflexive research team discussions to ensure that themes faithfully represented participant data. All data were recoded according to the final set and definition of themes and subthemes.

3. RESULTS

3.1. Recruitment and retention

Fifty‐six email and phone enquiries were received from which 11 participants were enrolled. Table 1 shows participant characteristics. Six participants were randomly allocated to the immediate treatment group (mean age 71.8 years; 2 women) and five participants to the wait‐list control group (mean age 70.8 years; 2 women).

TABLE 1.

Participant characteristics

Group allocation	ID	Diagnosis	Age	Sex	Time since diagnosis a
Immediate treatment group	Participant 1	Alzheimer's disease	78	M	6 months
	Participant 2	Alzheimer's disease	60	M	2 months
	Participant 5	Vascular dementia	69	M	1 month
	Participant 6	Frontotemporal semantic dementia	78	M	4 months
	Participant 9	Alzheimer's disease	70	F	5 months
	Participant 10	Vascular dementia	76	F	2 months
Wait‐listed control group	Participant 3	Alzheimer's disease	77	M	2 months
	Participant 4	Lewy body dementia	65	M	6 months
	Participant 7	Alzheimer's disease	75	F	1 month
	Participant 8	Alzheimer's disease	66	M	8 months
	Participant 11	Alzheimer's disease	71	F	3 months

^a Time since diagnosis at application to the study.

Reasons for non‐participation included: being ineligible (n = 15), could not travel to the study location (n = 4); could not commit the time constraints (n = 1); not interested (n = 3) and 22 did not respond after being sent study information. Of the 11 participants enrolled, 10/11 (91%) completed the 12‐month follow‐up (Table 1, Table S1).

3.2. Fidelity and adherence to intervention by therapists and participants

3.2.1. Fidelity

Following initial participant interviews, coaches determined that the three stages of the program (adjusting to the diagnosis, living a good life, planning for change) were not appropriate for all participants, and the number of counselling sessions needed to be more flexible (i.e. between 6–14).

The presenting issues and cognitive capacity of participants required a more flexible tailored approach than the structured program that was initially planned: ‘It requires a lot of adaptation from person to person. And not just the same intervention adapted multiple times.’ (Coach). For some participants, counselling helped them through the shock of diagnosis. Others required ‘real practical advice’ (Coach). Some participants did not have the cognitive and emotional capability and/or resources to engage in recommendations around cognitive, social and physical activity.

3.2.2. Adherence

All participants participated in the coaching sessions (mean 12; range 6–14). The recommended number of sessions as judged by the coach were completed by 10/11 participants, while one was unwilling to complete the sessions. Eight of the 11 participants took part in peer mentoring while three declined. Monthly peer mentoring sessions were sometimes difficult to schedule due to clashes (e.g. pre‐planned travel).

3.3. The acceptability and applicability of program to participants

3.3.1. Acceptability

Most participants found the pilot study worthwhile. One participant explained that they ‘did get really a lot of value out of [the program]’ (Participant 10) while another called the program ‘a life‐saver’ (Participant 11). Nine of the 11 participants said they would recommend this program to others newly diagnosed with dementia. Participants valued the informational and emotional support and described having greater understanding of their condition and reduced isolation and worry.

3.3.2. Combination of professional and lived experience support was valued

Combining counselling and peer mentoring contributed to the program's acceptability. For some participants, the psychoeducation and counselling sessions provided greater insight into their condition. Talking with the coach helped to assuage worries, improved outlook and restore self‐confidence by allowing individuals to realise their own strengths to overcome difficulties: ‘It's enabled me to consider and focus on what strengths I have and to utilise those strengths…to help me get through the symptoms of my condition’ (Participant 2).

Talking to a ‘dementia lived experience expert’ peer mentor was also valued: ‘it's nice to talk to people who understand where you're coming from.’ (Participant 9). Participants described their peer mentor as ‘easy to talk to…helpful and supportive’ (Participant 9) and ‘compassionate’ (Participant 10). Peer mentors were valued for their ability to draw on their past experience and impart knowledge to help participants navigate their own diagnosis: ‘I've found [that] you can bounce things off other people that have already gone down that path.’ (Participant 2).

The combination of counselling and peer mentoring made the program ‘invaluable’ (Participant 11) for some. One participant remarked that the combination of ‘meeting with the psychologist and talking [and also] meeting with a mentor… stops you from being isolated’ (Participant 2). Having the support of both an expert coach as well as a peer mentor with a shared dementia experience allowed another participant to regain confidence and witness a personal transformative shift from ‘being this person that was frightened …back to the person who's prepared to give it a go even though she knows she's going to lose the words’ (Participant 11).

3.3.3. Participant expectations impacted acceptability

Participant expectations regarding what the pilot would achieve for them affected acceptability. Some participants ‘understood relatively quickly that the counselling wasn't going to remove their dementia’ (Coach) but the program could ‘help them live well with the dementia’ (Coach). However, other participants expected the program to improve their dementia despite the program not promising this: ‘one or two came into the program with an expectation that they were somehow going to get rid of the dementia through what we were doing…which wasn't possible’ (Coach). Disappointment regarding unmet expectations was expressed by one participant who thought the program did not make a significant difference to him as his problems with memory still remained: ‘It's the memory. It wouldn't matter what conversations [the coach and I] had here… I don't actually remember’ (Participant 6).

3.3.4. Family engagement improved the program

Acceptability was increased through family engagement. For some, being able to invite their families to counselling was integral. Family members were able to ask questions and gain greater understanding into their loved one's condition. ‘They get an insight…[and] understand what I feel in this disease’ (Participant 2). This also gave some families an opportunity to mend or strengthen relationships.

3.3.5. Stage of grief and acceptance affected acceptability of peer mentoring

The peer mentor team acknowledged that participants came into the program at varying stages of grief and acceptance which affected an individual's acceptance of the program. Participants who had accepted their diagnosis were more meaningfully engaged with their peer mentor: ‘From the word ‘go’ I didn't have people putting off the meeting … so that went straight forward’ (Peer Mentor 1). However, participants experiencing a deep sense of grief and who were unaccepting of their diagnosis were less likely to participate fully in peer mentoring. One participant who was initially ‘quite depressed and just very angry about [his diagnosis] … wasn't able to accept it and didn't want to talk to anybody about it…’ (Peer Mentor 3). Once the participant accepted his diagnosis, he was more willing to talk to his peer mentor about dementia: ‘…He suddenly accepted that this is what it was, and it was ok to talk about [his dementia]’ (Peer Mentor 3).

3.4. Applicability

3.4.1. Peer mentoring is not for everyone

Three participants said that the peer mentoring component of the pilot did not suit them. One participant declined the peer mentoring sessions because he already had the support of family and friends and did not ‘actually need to go looking for other people’ (Participant 6). Another also expressed the view that although he found the counselling sessions useful, he felt he did not ‘really need peer support’ (Participant 3).

3.5. Enablers and barriers to participation

Participation was initiated by a family member for 8/11 participants. Family members also enabled participation by being the main contact to arrange appointments and transporting participants to their appointments. However, some participants who were referred to the program through family members sometimes lacked interest or self‐motivation to participate. One participant said she participated because her sister ‘didn't really give me an option’ (Participant 7).

The cognitive disability experienced by some participants, hindered engagement. Although they enjoyed the sessions, they had difficulty recalling what was discussed: ‘[The coach would] give me strategies but then I forget the strategies’ (Participant 9). Travelling to the study location was also a barrier for interested people who did not participate, peer mentors and current participants.

3.6. The appropriateness of potential outcome measures

Table S1 displays the mean, range and standard deviations of the quantitative outcome measures collected. Overall, the assessment protocol appeared to be acceptable to participants. Possible floor effects were observed for Trails A and Trails B, and WAIS‐III Digit Span Task (see Table S1). No ceiling effects or floor were apparent in other outcome measures. The time taken to complete the set of assessments was 1.5–2 h at each time point.

Disparities were seen between the qualitative and quantitative findings on self‐efficacy and flourishing, making it unclear how suitable the quantitative tools were as outcome measures for this population.

The 7‐day log book where participants recorded physical and cognitive activities as well as their daily pedometer step counts was completed by all 11 participants at baseline, 9/11 at 6‐month follow‐up and 6/11 at 12‐month follow‐up. Two pedometers were misplaced by participants while another participant refused to wear the pedometer; suggesting that it may not be feasible to collect these data in a larger future study. Many participants had smartphones and perhaps a smartphone app could be used to measure physical activity.

4. DISCUSSION

This pilot demonstrated the feasibility of recruitment and delivery of a counselling and peer mentoring program for people recently diagnosed with dementia. The program was acceptable with most participants describing benefits including receiving informational and emotional support, improving their outlook and mood, and family relationships. Participants considered the combination of professional and lived experience support and inviting their families to sessions as important program strengths.

This study found that some participants were not keen to engage in the sessions as not everyone wanted peer support, and despite explanations, some had unrealistic expectations of the program. As a result, coaches had to adapt the planned program to better suit the cognitive and therapeutic needs of participants. Seeking direct referrals from memory clinics, and health professionals might better identify people who need informational and emotional postdiagnostic support and could also better inform how the program can be tailored to individuals' needs.

Most participants had been diagnosed within 6 months. A dementia diagnosis is a major life change wherein the diagnosed individual goes through a process of grief and acceptance similar to that of terminal diseases such as cancer, ²⁵ consistent with the Kubler‐Ross model of grief. ²⁶ In dementia, this adjustment is complicated by cognitive difficulties, societal stigma and fear. ²⁷

People with dementia who are having difficulty accepting their diagnosis, may not self‐identify as having dementia and actively seek post‐diagnostic supports though they may accept help if organised by their health professional or carer. ²⁸ In this study, participants' acceptance of their diagnosis influenced use of peer support. However, people with dementia might be prepared to passively accept services organised by their health professional and carer.

Transport was another barrier to participation. Transport has been widely reported as a barrier for people living with dementia, in accessing essential services including medical services. ²⁸ This is particularly exacerbated when people living with dementia no longer drive or lack access to transport. ²⁸ To overcome this, the study team offered remote online counselling sessions via a video conferencing service (Zoom Video Communications), however no participants took up this option. This study was conducted prior to the COVID‐19 pandemic. A significant increase in the use of videoconferencing and telehealth ²⁹ was seen during the pandemic which may enhance the acceptability of telehealth‐provided counselling in the future.

Although the qualitative findings suggested positive effects to participants, the domains were not captured in the quantitative outcome measures piloted. Future studies could consider other outcome measures more suited to this type of postdiagnostic intervention such as self‐stigma and social engagement. ²⁷ We approached this pilot as a longitudinal qualitative study, where sample sizes of 10 or less are common. Feasibility pilots with people with dementia have had similar sample sizes.

5. CONCLUSIONS

This small pilot study demonstrated the feasibility of delivering post‐diagnostic counselling for people with dementia. Dementia Alliance International has been hosting virtual peer to peer support groups for over 8 years. Dementia Australia has begun delivering a six‐session post‐diagnostic counselling program over 6 months by telehealth (without a peer‐support component), and a separate peer support program. Future research could also consider how such post‐diagnostic counselling services collaborate with health professionals such as their specialist or General Practitioner. A larger hybrid implementation randomised control trial should be conducted to evaluate efficacy and effectiveness.

FUNDING INFORMATION

This work was supported by a University of Sydney Ageing in Place seeding grant, and NHMRC Boosting Dementia Research Leadership Development Fellowship.

CONFLICTS OF INTEREST

Lee‐Fay Low has collaborations with Dementia Australia who are funded to deliver post‐diagnostic counselling and peer support. No other conflicts of interest to declare.

Supporting information

Table S1.

Low L‐F, Barcenilla‐Wong A, Fitzpatrick M, et al. Dementia lifestyle coach pilot program. Australas J Ageing. 2023;42:508‐516. doi: 10.1111/ajag.13169

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.