Living better with dementia at home and “respite services”

Dementia is not just about raging, but aging in place has emerged in international policy as a desirable societal image of growing old in a familiar environment. The majority of older adults prefer to continue to live in their current home and maintain their daily routines. Research has illuminated the ways in which living at home promotes a sense of personhood and “normality” in spite of multiple personal losses, age-related declines and chronic illness. The adverse consequences of relocation include stress, isolation, weight loss, depression, financial burden, and loss of personal possessions and personhood.

In particular, the number of persons with dementia who live at home for a longer period of time after diagnosis is increasing. There is a need for more knowledge about everyday life of persons with a dementia; particularly the lived perspective of persons who live alone. The wellbeing of people with dementia, living at home or in an institution, is influenced by several clinical variables, including cognitive deficits, behavioural and psychological disorders, degree of autonomy, and dementia staging. Analysis of cross-sectional data has, interestingly, revealed a lack of linear relationship between wellbeing and cognitive functioning for people with dementia living at home and in an institution. This observation is confirmed by the results of other cross-sectional studies.

The disappointing success of drug therapies in the dementias has, for many, underscored the need for disease management strategies that include non-pharmacological interventions and support for patients and their caregivers in daily life, especially in the home. Although, not much is known about what constitutes best clinical practice for  people with more advanced stages of dementia, most European countries’ policy is to try to keep people at home as long as possible, considering admission to a nursing home as a marker when the family is overwhelmed by the patient’s cognitive and functional impairment. But there are considerable jurisdictional differences, a reflection in part on the funding basis of health and social care in different countries. Notwithstanding, a primary goal of home care is to provide high-quality services at home, thus allowing people to age in place, educate individuals about living with their long term condition, and avoid or delay hospitalisations. The aim of home care is ultimately to provide community-based care based on individual choice and autonomy.

For such an approach to succeed, one has to have an accurate idea of what a person with a cognitive impairment can do as well as what he or she cannot do. Activities of daily living (ADL) comrpise an useful construct for working out whether an individual will be able to perform well at home. Retention of ADL performance is typically associated with personal, familial, and financial benefits, such as increased quality of life, decreased caregiver burden, and reduced care costs, as well as societal benefits such as a reduction in institutional rates. Basic ADL (B-ADL) is commonly defined as those most basic life skills constituting the ability to care for one’s self, which includes bathing, dressing, toileting, eating, and grooming. Instrumental ADL (I-ADL) refers to more complex life skills for managing family and home environment, which includes cooking, cleaning, and financial management.

In persons living well with dementia, residence at home depends on the size and the strength of the family networks but also on the availability of care services, which varies across countries and regions. In general, across many jurisdictions, two-thirds of people with dementia are cared by their families. In most cases, the best housing for people with dementia is their own home, close to the family and surrounded by the usual social environment because social environment is important for psychological balance in the elderly including people living with dementia. Here the existence of what is ‘around’ in the dementia friendly community becomes very relevant (e.g. how acccessible and inclusive are the built environments? how good is the local transport infrastructure? how good is health and care coordination in the locality?)

Dementia significantly alters family life, forcing caregivers to face important changes in their lives and usually coming to a progressive decline in physical and psychological state. Continuity of care, which involves health promotion, prevention, self management, disease control, treatment and disease palliation as applied to patients with dementia, requires interdisciplinary teams formed by professionals who provide distinct health and social services and ensure continuity of care with patient and family commitment.  Cognitive rehabilitation, introduced to improve cognitive decline, seems to improve, with varying degrees of success, daily living activities and the satisfaction of person with dementia (PwD), but this is most noticeable at an early stage of the disease. Health professionals should train or educate caregivers to improve their level of competence. As most patients with dementia reside in the community, any intervention designed for the home setting is especially advantageous.

In recent years, attention has turned to the possible role of physical exercise in the treatment of dementia, based on growing evidence of a link between exercise and cognition. Among persons with Alzheimer’s disease or other dementias, typically between 60 and 70 percent live at home where four out of five are cared for by family members. To illustrate, it has recently been mooted that a physical exercise intervention delivered by caregivers to home-dwelling patients with dementia is do-able, and associated with a trend for improved functional performance in this group of frail patients. Given the limited efficacy to date of pharmacotherapies for dementia, one can easily argue that further study of exercise intervention, in a variety of care setting, is warranted. Such interventions could result in improved quality of life for the person with dementia, reduce the physical and emotional burden on their informal carers, and reduce the costs to the community associated with community support and residential care.

Little is known about the consequences for the PwD of the quality of care provided by family members. But we do happen to know there is a vast army of unpaid family caregivers supporting people living with dementia, without whom the care and support structures would implode? Is care that is considered to be of high quality actually beneficial to the PwD, and if so, in what ways? Because the caregiver role is usually unanticipated, learning to become a caregiver typically occurs ‘on the job’. As a result of lack of preparation, caregivers adopt a variety of informal caregiving styles, some of which may be less than optimal or even harmful.

Physicians and other health care professionals, assisted living providers, policy makers, investors, consumers, and advocates wish to understand the impact these various processes and structures have on length of stay and ability to “age in place” in assisted living settings. Over 70% of American seniors live in private homes, which is where many prefer to be and stay. Older people fear loss of independence more than death, and independence is a major factor in quality of life in persons with dementia. Assisted living (AL) is an important and growing option in various nation’s long-term care system; indeed there is what some have articulated as a “long term conditions care revolution”. Due to differences, perhaps, in the philosophy of care among AL providers, there is considerable variation from one assisted living residence to another in structure, process (e.g. staffing ratio and nursing hours), type (e.g. specialised and nonspecialised care), and size of setting.

In research, more focus has been put on the situation of people with dementia who live with a spouse than those living alone. As the care needs of those living with a spouse becomes manifest, they are more likely to get around the clock support and the help needed in order to maintain a structured everyday life. Spousal carers play an important role for the person with dementia, and they contribute with household tasks as well as with the basics of survival. The spouse provides important support and care in the management of everyday life. Spouses especially, have reported feelings of depression and social isolation during the disease process. The feeling of isolation can occur due to reduced possibilities of talking to the person with dementia on the same premises as earlier on. Informal caregivers can feel that they are obliged to provide care, even if this is of their own free will, and be disappointed because this help can be taken for granted by the health care system. Research indicates that people with dementia who have a manifest care need and who live alone are more vulnerable than those who live with a spouse. They also live in danger of not managing their hygiene, not dressing properly, and even leaving their own home in search of a ‘home’.

In the UK, national guidelines from NICE and SCIE and the recent National Dementia Strategy both propose a systematic approach to the long-term support of people with dementia in the community,to correct the consistent deficits in care identified by a range of organisations. Home healthcare is proven to deliver better outcomes for patients, yield lower costs and reduce admissions to hospital. Home-based models of care are especially effective for patients with multiple diagnoses and co-morbidities with a high risk of hospitalisation. Today, 25% of all inpatients have a diagnosis of dementia although usually this is not the reason they come into hospital. It is widely accepted that many of these admissions could be prevented if patients and their carers were better supported at home. The challenge is to ensure that any new service model gets to the heart of the unmet needs.

It has been concluded that to implement effective service delivery, the experience of caregivers needs to be better understood. Carer service choices are affected by a complex array of other factors. These include individual personality traits – carers, for example, have varying levels of tolerance for their situations and the emotional, physical and financial costs of caring.

Respite services are part of social policy intended to relief the burden of care and to support caregivers’ coping strategies. Previous studies have pointed to the importance for caregivers to have private time and space, have highlighted that respite allows caregivers to re-assume a sense of their original lives. However, their precise effectiveness remains somewhat unclear and gender inequality in their provision has been observed in some quarters.



Conceptually, respite can be defined as: “A pause, a temporary cessation, or an interval of rest.”

For the wellbeing of people with dementia living at home, social care groups can be a crucial service. They also give the carer an opportunity to get some respite. Social care groups are therefore an important social activity for those living with dementia in the community. But not only does the availability of these social groups have to be recognised; the well-being and social experience gained through these groups also has to be analysed.

Services such as respite, either in the PwD’s home, in a day care centre or in a residential facility, can reduce this burden, easing-albeit temporarily-carers’ physical and emotional workload. The general impression is that respite services are under used, with only 30% of carers of PwD reporting having used a respite service even where referral has been made and services are readily accessible. It is somewhat surprising that the actual usage of formal respite services by carers of persons with dementia has been repeatedly shown to be relatively low. Possible conclusions here are that if respite services are under-utilised, then they may not be satisfying carer needs as identified above or there are negative connotations associated with its use.

However, debate by key researchers in this area has determined that respite has a dual conceptualisation. Respite can be seen both as an ‘outcome’ or as a ‘service’. Respite services may be delivered informally by family and friends or it may entail the use of a formal service. Formal respite services encompass different types of services, which range from in-home, adult day care centres, residential aged care facilities to hospitals. The type is determined by the needs of the carer and the person with dementia and the availability of services in the locality.

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