Rehabilitation is defined by Barnes and Ward (2005, p12) as “an active and dynamic process by which a disabled person is helped to acquire knowledge and skills in order to maximize physical, psychological, and social function.” They discuss it as a practice that increases and ultimately maximizes functional ability thereby reducing disability or other impairment. In this way rehabilitation promotes activity and participation, and for people with dementia, this is significant as we know isolation is a salient feature of dementia, and also increases the risk of dementia (Laurie 2013, Innes A 2004, Shub et al. 2011, Innes 2009, Anonymous 2009, O’Morain 2000, Levenson 2005).
The King’s Fund (King’s Fund 1998, in Squires & Hastings 2002) determined that the primary objective of rehabilitation involves restoration of a function (mental or physical) or a role, requires a multi disciplinary team and the three basic approaches are to reduce disability, acquire new skills and strategies, to reduce the impact of the disability, and approaches that help to alter the environment, both the physical environment and the social environment, so that a given disability carries with it as little impairment as possible. Client H lives in her own home with no community services, although diagnosed with ‘mild dementia’ of the Alzheimer’s type approximately twelve months ago. This case study used ‘Meaning in Life’, ‘Satisfaction in Life’ (Authentic Happiness 2014), and Specific, Measurable. Achievable, Relevant, and Time limited (SMART) goal assessments to evaluate before and after, and finally, discusses how this can be applied further.
Client H is a reasonably fit 86 year old woman, who I met through a volunteering program early in 2014. She is widowed, a mother of six adult children, one deceased over thirty years ago, and one son has severe mental illness. She has fourteen grandchildren and three great-grandchildren. She volunteered for fifty two years, stopping due to losing her license, and experiences intense sadness about this. As a thoughtful, spiritual, practicing Christian, Client H is devastated she can no longer provide social support to the homeless community, nor give in-home Communion to people from her Parish unable to attend Mass. She has been member of a number of different walking groups, but felt too embarrassed to continue, partly due to the shame she feels having dementia. The chosen rehabilitation intervention was walking, specifically because prior to the last twelve months; she has walked for exercise, socialisation and pleasure almost daily for over sixty years.
Mrs H said: “I have always been a sociable caring person but when the diagnosis of dementia was made it upset my confidence and I felt that people saw me differently and didn’t want to see me anymore. I feel hopeful if I can get support to continue walking, everything will improve.” This case study focuses on the goal she has prioritised. When we met prior to the intervention commencing, her three main goals were to walk regularly again, to feel less sad, and to join in with the social activities at her Parish again. Unfortunately she has had quite a few falls, due to changes in her depth perception and spatial awareness, and hence her family are adamant she must not go walking alone. She also has a pacemaker. She is being supported by her son who lives in a country town about one hour from Adelaide, who visits most days a week and is her carer. Continuing to live an independent life in her own home is of paramount importance to her, and she believes by staying active, she has a good chance of achieving this outcome.
“The NSF recognizes that rehabilitation can improve cognitive functioning, thus a rationale for exclusion based on lack of evidence of effectiveness is flawed” (Marshall, 2005, p42). Law et al. (1999) systematically reviewed published research concerned with activity programmes for older persons with dementia, including walking as a rehabilitation intervention. Evidence in 1999 was weak to support this research, although more recently physical activity such as walking is being recommended by Alzheimer’s Australia (2014) as part of preventative interventions and proactive management of dementia and brain health.
Marshall (2005, p92) says mobility problems for people with dementia can stem from a wide range of causes, including physical things such as shuffled gait or rigidity, balance and balance problems due to Parkinsonian features, or social issues such as apathy and loss of confidence, fear of falling and so on. Client H has a fear of falling following her numerous falls, and also understandably protective adult children.
Marshall says pain may also be a factor in reducing someone’s desire to exercise at all (2005, p93), and this lady does have some chronic pain, following bilateral hip replacements performed over fifteen years ago, that her surgeon now feels she is too old for him to repeat. However, her desire to stay mobile can be seen by her previous discipline to swim six days a week ever since the hip replacements, up until her diagnosis of dementia, and her almost daily walking regime to keep fit for over sixty years.
Walking is found to be an effective rehabilitation intervention, resulting in a significant improvement in mobility performance and improvement in balance (Sinclair, Morley & Vellas 2012). Walking not only enhances mobility, which is important as it effects not only ability to walk and move around, but also influences other areas such as eating, toileting, personal hygiene, and leisure activities (Squires & Hastings, 2002, p228).
Goal setting is essential to rehabilitation, and it is useful to remember when the mnemonic SMART goals are being met; all goals should be Specific, Measurable. Achievable, Relevant, and Time limited (Barnes & Ward 2005, p14, Hurn, Kneebone & Cropley 2006). Squires and Hastings (pp132, 150-151) also place importance on goal setting, and how complex it can be for a multi disciplinary team but also that a team is essential. Short term and long term goals, which the client has been central to making is also the key to successful outcomes. Client and staff motivation to achieve outcomes and support the client’s goals is important as well as sustaining motivation over time. Lemon, Bengtson and Peterson (1972) reformulated activity theory into an interactionist theory, meaning both symbolic interactionist in the form of a relation between self and role and the use of reflected appraisals to bolster the self as well as social interactionist in the form of role supports going from others to the aging individual. Therefore they claim, the motivation for maintaining activity was not the meeting of functional needs but instead the need to maintain a socially supported self-structure that was assumed to lead to optimal life satisfaction.
In planning the rehabilitation program for Client H, I asked her to allow me to complete the Goal Attainment Scale (GAS). This scale was developed in the 1960’s by Kiresuk and Sherman (1968) originally to evaluate mental illness programs, and has since been expanded widely and adopted to evaluate healthcare services, to evaluate progress following the implementation of a restorative, community or healthcare intervention. Numerous studies have found it to be a promising method for measuring progress towards the type of highly individualised goals that characterise rehabilitation (Cicley Saunders Institute 2010a, Bravo, Dubois & Roy 2005, Bouwens, van Heugten & Verhey 2008, Kiresuk & Sherman 1968), however she was not keen to participate in this, preferring something more focused on her psychosocial issues.
Her three main goals were to increase mobility and independence, increase her sense of wellbeing, and reduce her sadness. Her issues revolved more around social than pure physical things, in particular wanting to feel less sad. After discussions on various other evaluation tools for us to use, with permission and support she completed two questionnaires on the University of Pennsylvania Authentic Happiness site (2014), and this supported her doctors belief she is not depressed, but rather deeply sad about the many losses she feels have happened since being diagnosed with dementia, most specifically those that have resulted in her losing meaning and satisfaction in her life.
She does need some support with her short term memory, and we implemented a white board in her kitchen, as well as made some laminated reminder sheets around her home. The other thing we did was to organise for her to hire a walker, so that she can walk every day regardless of if she has a buddy to go with her. The machine has the option of a safety lead which she says she uses, and I believe her. An appointment with her physiotherapist for an assessment prior to commencing a program of walking was made, and she was advised to go ahead. We then contacted various walking groups, including one she had been in previously. Most were comfortable knowing she had early stages dementia. She chose one with her Parish, as felt it would reconnect her with people she might know, one supported by the heart foundation, twice a week with a volunteer, and on other days she would use her walker. Walking offers her a physical exercise which is also good for mental health, and one she can increase as her fitness and confidence returns. As part of a group or with a volunteer, walking also provides her with social support, increasing her confidence and reducing her isolation and sadness, and she planned to walk minimum of five times a week, four of those times with companions. The impact of this on her family and in particular her son has been significant, and he feels less anxious and less like he needs to coerce her into residential care, something which came to light in conversation three weeks into the four week rehabilitation program.
Using the rehabilitation process as outlined in Chapter 8: The process and outcome of rehabilitation: in Rehabilitation of the older person (Squires & Hastings 2002), with the assistance of the client, a report from her physiotherapist, her general practitioner and her family carer, as well as conversations with her gardener and cleaner, both people who see her weekly and have known her for over ten years (with permission), this made up the multidisciplinary team, as recommended for optimum positive rehabilitation outcomes for older people and people with dementia (McCabe 2007, Manthorpe 2006, Marshall 2005, Pomeroy 1994). We identified her three main problems and chose to select a rehabilitation intervention for one of them, namely walking. She selected the authentic happiness meaning and life satisfaction questionnaires, which she scored low on.
Her fear of walking was overcome by having a companion (other walkers) and as recommended by Marshall (2005, p93), this reduced her fear, as well as increased her mobility and confidence at home, and the courage of her carer to be more mindful of her need to remain independent.
Overall, the intervention worked really well in particular by reducing her sadness and loneliness, and by increasing her feelings of independence, confidence in walking and physical mobility. She discovered many of her church friends had been afraid to talk to her about dementia, as it is something they are terrified of getting, but know very little about other than the myths and fear instilled in them by the media. She did not want her before and after Authentic Happiness questionnaire assessments shared, but was happy for me to quote her:
Before intervention: “I’m nervous about walking again, and worried people will treat me differently because I have dementia. I’m also worried about my son, and the burden I am to him, so really hope this helps.”
“I feel so much happier and able to join my own life again, my walking is better, I feel stronger and my son is much happier about me staying at home. He did not want me to share his wish for me to go into residential care as felt guilty, but is a lot happier I am feeling better, especially because I am not falling over now.”
Interestingly, she did not discuss her dementia in the final interview, and her walking has changed her life back to her pre-diagnosis one of friendship and regular physical activities. She has also agreed to volunteer at the Parish again, but in activities at the hall which do not rely on her driving.
As I am not in clinical practice, I felt it inappropriate to evaluate her balance, but asked her physiotherapist to do this, and this was reported as improving significantly. Her walking diary, where she recorded days and times walked, commencing with 17 minutes for her first walk, to an average of 42 minutes each day during the fourth week. She had also been doing gardening again in the last two weeks of the program, a sign not only of her confidence but of her improved balance, strength and mobility. When walking with her, I observed her confidence and well-being improve significantly, in particular by the increase in laughter between us. Her son reported she was much happier, and that he had had no conversations where she was in tears during the last two weeks. He also self reported he was more confident in her remaining at home, and felt less worried all the time. The ability for this program to continue as part of her weekly regime is easy, especially now that she has reconnected with walking groups and members of her Parish.
Overall, the outcome was extremely positive, and her final last statement was: “My meaning and purpose in life has returned, and I feel like I am doing God’s work again” which to her was of the greatest importance.
Implications for practice
The implications for clinical practice are significant, and walk-in is an inexpensive rehabilitation intervention, which is also a physical requirement of most daily activities, which would be easy and inexpensive to implement in the community care sector, as well as in residential care. The whole of health is impacted by physical activity, and walking it the one exercise that costs no money, other than time and could be supported with volunteers. Intent and good will is required by aged care providers however, but the benefits in terms of improved outcomes for residents would be significant. Not only will other interventions be reduced, having mobile clients who can manage their own daily needs would be beneficial to all, including costs savings to management.
Walking would also then stop being labeled wandering, which so often suits in a client being treated inappropriately.
The things that went well for this lady were the involvement of setting up the plan; completing the questionnaires online in private and then seeing her scores change as she became less sad was the best outcome for her and then the increase in her activity and socialisation due to the walking regime. Next time, I would prefer to find a way to evaluate using the GAS evaluation tool, as feel this would be very beneficial to both the clients and the service providers if it was used in aged and community care more. I have never seen it in use in Adelaide, and many clinicians doing this course said they have never seen it used.
It would be very useful to see walking used more widely in the sector for improving independence, balance, strength, and socialisation for people with dementia and the elderly. Walking harnesses many things, not least of all, the clients need to get up and do it for themselves.
It is concerning to have read Perspectives on Rehabilitation and Dementia (Marshall 2005) whose book was born from a conference on the importance of rehabilitation and dementia, and yet during this course I completed this case study for, nine years after the publication of that book, to communicate via the Moodle with registered nurses working in rehabilitation units, who see dementia and aged care patients, but who admitted to never having considered rehabilitation interventions for these patients.
The main learnings Client H and I gained from the chosen rehabilitation task is that the clients goals need to be at the heart of the intervention, or the likelihood of compliance is low. I am proud to have worked with this woman, a role model to others on living a ‘good’ life, and on self management. She was a delight to work with, and taught me about resilience as through walking with her, I discovered many personal tragedies shared in confidence she has experienced in her own life, and yet she remains positive and interested in others.
The greatest lesson is that rehabilitation is valuable and worthwhile for the frail elderly and for people with dementia, regardless of the minimal amount of evidence based research to support it. There are times in caring for people with dementia that research needs to come second to quality of life including simple things like joy and perceived well being.
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