Resident-, family-, and staff-identified goals for rehabilitation of long-term care residents with dementia: a qualitative study | BMC Geriatrics

Out of the five residents who expressed interest in the study, one was determined to be ineligible for participation due to receiving active end-of-life care, and the other resident had mild dementia (MMSE = 28). The remaining three residents were female and between the ages of 82 to 98 years. Residents lived in LTC for 2 to 4 years and had dementia for approximately 7 to 8 years. There were seven family members of residents with dementia in LTC involved in the study, including four children, two nieces, and one spouse/partner of residents. Eight family members initially contacted the researchers to participate, but following eligibility identification by the researchers, one withdrew their interest in participating. Most of the family members were female (n = 6), with their ages ranging from 56 to 74 years. The residents related to the family members had dementia for 5 to 21 years and lived in LTC between 2 and 15 years. Five staff members working in LTC participated in the study, two females and three males between 22 and 55 years of age. Two of the staff members were physiotherapists, one was a physiotherapy assistant, one was a healthcare aide, and one was a registered licenced practical nurse. The staff members reported working in LTC for 3 to 20 years.

Rehabilitation goals for residents with dementia in LTC

Overarching theme: maintain or improve function, mobility, and quality of life

Figure 2 provides an overview of the results derived from the analyses conducted in this study. Maintaining or improving function or mobility was a central goal for rehabilitation for residents with dementia in LTC. Family and staff members expressed the importance of staying active, indicating that it allows residents to do things they enjoy such as leaving the home for an activity with family, or going for a walk either outdoors or around the facility. Residents described wanting to be able to do activities like sit up, stand, and walk so that they could participate in activities within and outside of the home. Further, family members mentioned that maintaining circulation and blood flow while being mobile and active is very important especially in residents with comorbidities such as heart conditions.

Although maintenance of function was at the forefront of many of the participant conversations, staff members also mentioned regaining lost function as a goal for rehabilitation for residents. This could be function that was lost because of dementia, or because of injury or comorbidity. Residents mentioned regaining lost function such as the ability to sit independently or walk. When discussing progressive walking and strength programs, one staff member describes:

Within that it is different goals, and the goals then are dependent on the acuity of what the resident is experiencing. If someone has had a tumble, they’re a little bit sore, or if they’ve had a urinary tract infection and they’ve been off their feet for a little while, can we help them regain what they recently lost? And giving them that support to do that on a regular basis can be sometimes successful.

Improvement of quality of life is a goal for rehabilitation that was discussed by both staff members and family members. Participants remarked that this does not necessarily mean slowing the progression of the dementia, but instead making the resident feel as comfortable as possible throughout their stay in LTC. One staff member described this idea:

…rehabilitation won’t necessarily mean a decrease in the progression, but it could just mean living a better life, having a better quality of life in the different stages that they’re at. I mean, if you can avoid a wheelchair that, for some people, can often give them better quality of life, no matter what stage they are in dementia. That’s, I think, a big one. And I think part of the rehabilitation is improving the quality of life. I mean, just about all of them want to be home and don’t really want to be here. But if you can make it as pleasant as possible, then that’s OK.

The findings revealed an interrelationship between function and mobility and quality of life. Function and mobility were deemed important for good quality of life by family members of residents and staff, as well. One family member speaks to the benefit of having even minimal mobility. For example, if the resident is mobile enough to be able to transfer to a wheelchair, there are then more opportunities for family members to take residents out of the LTC home for activities and gatherings. Further, this staff member speaks to the role of mobility in being comfortable from a physiotherapist’s perspective:

“I just have this physio lens hat on right now, so thinking of movement, but if you’re just sitting there all the time, it’s painful, so you experience discomfort. So there’s this relief coming from movement that you have just being able to move, lubricating joints and have a change of position. That’s an aspect of quality of life, just being comfortable.”

Subtheme: body structure and function

Maintain upper body strength

Maintaining upper body strength was mentioned by family members as a goal. This was especially important in the context of independent wheelchair propulsion and in encouraging residents to participate in rehabilitation with family members. For example, one family member described:

We started doing exercises with her so she could get her arm above her head and throw. She was a baseball player, so we could get her to throw soft, squishy balls at us and get her arms and her hands moving because we knew it was important for her to have some mobility in her hands and arms.

Physical comfort

Family and staff members both mentioned reducing pain as a goal. They mention reducing physical pain for the resident as much as possible, recognizing that the resident may still be in some pain despite rehabilitation efforts. When discussing fall and injury prevention as a rehabilitation goal for their mother, one family member emphasized the importance of pain reduction:

“.and keeping her pain free. Keeping her pain under control as much as we can.”

Several staff and family members noted that being comfortable also plays a significant role in the resident’s quality of life. The participants linked being comfortable with being pain-free, as well as being generally content. This staff member elaborates:

“Are they comfortable? Pain-free.…I think those things are important.”

Subtheme: activities

Prevent falls

Fall prevention was mostly discussed by staff and family members. Discussion was primarily centred around the importance of maintaining strength and mobility to prevent falls, and how maintaining strength and mobility will also impact the effect a fall will have on a resident. Conversely, it was noted that with fall prevention as a main goal for rehabilitation, physical function is often sacrificed in the interest of resident safety highlighting a challenging balance between autonomy and safety. As one staff member notes:

With fall prevention quite commonly as a goal, how do you balance fall prevention with quality of life? That to me is also a really challenging ethical question. When you’re balancing that living at risk. When you’re trying to help somebody physically function better, but they don’t necessarily have the insight that their issues of cognition and impulsivity and overestimating their own abilities puts them at constant risk. Where do you draw the lines on these types of things for them? And it’s a moving target and an ongoing negotiation and level of comfort for those types of things.

Walk or locomote

The ability to walk is a goal that was expressed by residents, family members, and staff members alike, and it was the most referenced activity within this theme. Walking was important for several reasons, including enjoyment, quality of life, and practicality. For example, a family member described that it was important for their spouse to be able to walk for enjoyment, as they had been an active walker for most of their adult life. Another family member described the benefits of being able to walk in a practical sense, as, if the resident can walk even a minimal distance it could facilitate the transportation of the resident outside of the LTC home into the family member’s home or move around the home, for example, to meals. Where walking was no longer possible, self propulsion in a wheelchair was also described. As one of the staff members described:

“I find the biggest one is just being able to walk. For example, we have a physiotherapist and they take them to the gym and they get the legs still moving. I think that’s most goals, is just to keep them mobile as long as we can because I find what happens is they are such a high risk for falls that just, nice that we can keep them walking as long as we can or if they’re in a wheelchair moving their legs and that around.

Maintain activities of daily living

Several staff members emphasized the importance to residents of maintaining activities of daily living. As one staff member noted:

I think just maintain the abilities, physical abilities to continue doing activity of the daily life. Stand up, sit down, walking, maybe roll, roll transfer in bed. From my job position and perspective, I think that is the main focus of rehab.

The activity of daily living the staff members mentioned most was toileting. They also discussed the specific activities involved in toileting independently, such as donning and doffing of clothing and performing basic personal hygiene. This staff member speaks to how toileting fits into rehabilitation:

Toileting is a good example. There’s toileting programs where we can do things to prevent them from being incontinent. So, it would be like getting them set up so they’re being toileted every two to three hours…. Sometimes they come here completely incontinent from the hospital because, as we know, their focus is very different than ours. So, we get them here and then we start toileting them all the time. And some of them do end up not being incontinent anymore from it, for a while.

Other activities of daily living that were discussed were the ability to sit up, stand, and transfer to a bed. Sitting up is important for resident comfort and especially for eating and drinking. One resident described that they would simply like to be able to comfortably sit in their rocking chair and relax. Another resident, who expressed having more difficulty sitting up on their own, described being able to sit up as her primary goal for rehabilitation. When asked what her goal was, the resident stated, “I can’t sit up”. The interviewer asked if she would like to be able to sit up, to which she responded “yes”. This resident was observed having difficulty maintaining upright posture during activities throughout the home such as bingo and during meals.

Both staff and family members commented on how being able to stand and weight bear is important to residents. Staff members described that the ability to stand, with or without an aid, is necessary in maintaining many functional movements such as accessing the toilet. This family member describes helping their mother perform leg and hip strengthening physio exercises to maintain her ability to stand:

I was doing leg raises with Mom in her wheelchair to keep her quads strong because we knew they needed that for her hips to get her to stand. So, having that program early on is really important.

Being able to transfer to a bed is an important goal for residents, as described by staff members. If a resident possesses the ability to transfer to a bed, it allows them more freedom to leave their bed and to potentially leave their room on their own terms throughout the day.

Additionally, staff and family members mentioned the ability to do activities of daily living as an indicator for quality of life. This staff member relates being able to do activities of daily living to autonomy and highlights the importance of being able to toilet, specifically:

…being able to use the bathroom. I think for some residents, when they have to move to a sling lift or a bed pan or even just a pad that that can be really hard and not ideal for them, so being able to maintain that ability to use the bathroom is a quality of life thing.

Stair climb

Stair climbing was raised as a potential goal for rehabilitation, particularly as it relates to having the ability to leave the LTC home to visit with family. If the resident’s goal is to be able to leave the LTC home for a family outing or event, then they need to be prepared to function in a potentially unfamiliar environment, as this staff member describes:

We do even get into sometimes ability to stair climb, and those kinds of accessibility issues. Things that are very challenging from long-term care because we don’t do that typical home visit, discharge planning, and often these sorts of visits that are coming up at Christmas times and big celebrations or funerals or things like that are going into unfamiliar environments for everybody.

Keep hands busy

Family members and residents described keeping their hands busy as a goal for residents with dementia in LTC. A resident mentioned that it is especially important to them to have something to do with their hands because they mostly stay in their bed or chair. During the observation, residents were often completing tasks to keep their hands busy such as folding towels, completing puzzles, or creating arts and crafts. A family member outlines the importance of aiding residents in keeping their hands busy early, so that it will be easier to maintain as the disease progresses:

Unfortunately, I think what the key for a lot of patients with dementia is you gotta get them early to using their hands. So they have some connection to their body. And with dementia, they lose their use of words and language, but you can cue them like I could cue mom a lot with her hands in different things to get her to pick up a pencil.

Subtheme: participation

Engage in enjoyable exercise

Participants emphasized the ability to exercise as a goal, including all forms of exercise within the resident’s capacity such as using a bike in the fitness centre or attending seated exercise classes. Residents were observed participating in group exercise that included enjoyable movements like seated dancing. One family member expressed the ability to dance as a goal for rehabilitation, as it is an activity their spouse has always enjoyed:

In the early part of her stay here, she’s always loved dancing….For the first few months, we would always go to that and this was lovely for her. But [dancing] was something of a form of physical activity that she’s always enjoyed. So, for her for a time that was also important.

Maintain human connections

Family members expressed maintaining human connections as a goal for rehabilitation where the benefits of rehabilitation enable the residents to engage in social activities. One family member remarked that the rehabilitation process itself was a social activity for the resident:

So, that social aspect too, so just having human contact, be it with a physio, a nutritionist, a nurse, a personal support worker, is huge to me.

Further, maintaining connections was the most frequent answer to the question of what quality of life means to the resident. Most commonly, both family and staff members referred to connecting with family and friends, either with in-person visits or phone calls. However, some participants mentioned maintaining connections with other residents and even staff members, as well. This family member describes her family’s joint effort in ensuring their mother receives adequate socialization:

“She loves to be with people. She loves visitors. She likes to get phone calls.… She likes to sit and chat with the other table mates and things. I like to see her more interacting with other people in the unit, not necessarily at a group thing. Just sitting the dining room, chit chatting.”

Maintain independence

Both family and staff members indicated that maintaining independence is important to residents. One staff member noted that it is a goal of residents to prevent decline in their autonomy and independence. From another staff member’s perspective, the idea of maintaining independence motivates residents to engage in rehabilitation, and the same staff member described its significance relative to quality of life:

…can we set somebody up in an equipment that they can get around by themselves? If there’s any way that we can maintain that little bit of independent mobility, I think that adds to a quality of life. If somebody can move their chair across the room to get the drink of water without having to call somebody, that’s very significant.

Participants noted that many residents can maintain at least some level of independence regardless of the stage of their dementia. For example, for some residents being independent could mean being able to walk, while for others it could mean being able to use the TV remote or being able to access the call button.

Leave the LTC home for activities

Some of the staff members emphasized how important it is to some residents to be able to leave the LTC facility for activities. The staff members describe that significant barriers to achieving this goal are if the residents are unable to walk or if they are unable to get into and out of a vehicle. Another factor at play is that the staff members must effectively communicate the potential risk that traveling from the LTC facility may pose to the resident. This staff member describes the importance to residents of leaving the LTC home to visit family, especially around the holidays:

For some of them, a big one is still being able to go out with family and getting into and out of a car. Being able to do a couple steps into a house. I find especially around the holidays that’s a big goal for them to be able to do that.

Moreover, spending time outside of the LTC home was a common response to the question of what quality of life means to the resident, especially from family members. A couple of family members mentioned the importance of being able to leave the LTC home for hours to attend family gatherings, while others highlighted the benefit of getting fresh air in the garden at the LTC home, for example. As this family member states when asked about quality of life for her mother: “Be able to get around a little bit or even just get outside once in a while for some fresh air.” The resident participating in this dyad interview reported she enjoyed going out to the garden: “And every day we would go up (to the garden) and take our coffee and a doughnut. And we’d sit by them and we’d almost see the flowers growing.” Having the mobility to get to the garden was very important for this resident’s quality of life.

Participate in group activities

Staff members describe that it is important to residents to be able to participate in group activities due to the mental and physical benefits. Not only are group activities often good exercise for the residents, but they also offer a social environment. Both family and staff members also emphasized the importance of participating in group activities for maintaining quality of life. Residents were observed participating in several group activities like music sessions and group exercise, which produced happiness and joy for the participants. One of the staff members referred to the social and physical benefits of group exercise programs, while this family member expressed the benefit of different types of group activities:

So, they do have activities here, which is great….She loves Bingo. And trivia….She used to do a lot of it when she first came in,